Hide In The Toilet!

 

“I lie to myself all the time. But I never believe me.”

Everybody is going through it at the moment, some have it worse than others, so when I started to feel a bit more off than usual I didn't think much of it. I put it down to just one of those things really. 

In October 2019 I went into hospital for a small op. The team commented on my oxygen sats not being great and I put it down to asthma and we agreed I should maybe take better care of it and that was that.Off I went and thought no more.

December came and I felt very breathless. My walks were getting shorter and I had bad pain in my ribs but sure that was part of fibro so on I soldiered. My son caught bad pneumonia and was very sick in Manchester and I was advised against going to see him due to this new disease going that was very contagious so I sat tight and hoped for the best. He pulled through thankfully, after along battle and I guess I just kept on keeping on. All the while feeling more and more ill. I simply couldn't breathe. The walking stopped. Everything stopped. Time for the doc.

Covid test came back negative and steroids and antibiotics were on the menu. Chest infection. I NEVER get chest infections. 

A couple of weeks later back at the doctor. When he asks how I'm feeling I always say I'm grand but by now he knows me better. More antibiotics and steroids. So off I went, still feeling like my chest was held by the tightest elastic band in the world while being sat on by the biggest elephant in the world. 

By this stage the pain inside was becoming unbearable. I was vomiting a lot, and when I did it burned the front of my chest. so bad I was sure my chest was going to burst open and my heart jump out.

By this stage I would describe life as merely existing. No going outside, no visitors, no walks with the dog. Waking, sleeping, waking, eating.  I was disinterested in everything. 

Back to the doctor I go. By now months had passed and I could tell even the doctor was worried. Still going along with my "I'm grand" attitude and trying to convince everyone else I was, off I went to have an emergency chest X-ray. 

I had heard nothing so thought we must be making progress when I got the call to go see the doctor.

The news was grim. Pneumonia in both lungs.Both lungs were full of thick mucus, both had collapsed and were scarred, there was a shadow on one and I had all the signs and symptoms of severe COPD. Eight months later and here we were. He took out his pad to write me a letter for hospital but I stopped him right there. Both my parents passed away from pneumonia and I am terrified but there was no way I was going into a covid infested hospital. So a referral to a specialist and more steroids and antibiotics and a new inhaler later off I went, back to bed.

I was waiting a further 4 months for the appointment for the specialist appointment. It was meant to be a matter of weeks but covid saw to that. The specialist was completely speechless that I was so bad and for so so long. Again he tried to persuade me to become an inpatient in the hospital but I was having none of it. Then he sat me down and said "Sharon, I don't think you realise how ill you are. I can't promise to bring you back from this, but I can promise I will do everything I can, I will throw everything I can at it, to make you better. It has been left far too long and there has been a lot of damage done and you have to realise how sick you really are. We have to come up with a care plan, and manage your illness and try bring you back because at the moment you're on the brink"

Not words I wanted to hear, but maybe words I needed to hear.

If I get covid I will most likely die. My lungs can't cope at the moment so any further infection and I will be over the brink. 

I have hardly seen my family in over a year. I miss my boys and my brothers. I miss my friends.I am too weak to go for a walk so I open my windows wide and enjoy the fresh air. My daughter is my support bubble and she looks after me. I'd be lost without her.

And so to today. I'm on 4 different types of inhaler a day, one that makes me immunocompromised. Oral steroids, brain meds, anti inflammatory lung meds, 6 peak flow tests a day, my oxygen sats measured regularly and no strenuous movement. I sleep a lot, not always regular hours, I can't do regular stuff like cook or clean yet but I potter about a bit when I can. Washing and dressing myself wears me out and some days are worse than others. 

I do all the paperwork from my preschool which helps keep my mind active but sometimes I'm not able for that and it tires me out too much. 

The frustration is unreal. There are days when I literally have no fight left. The past couple of weeks have been the worst. I got to the point where I was so sick I just couldn't fight and thought this is it. I'm done. I don't have any more left to give. I've been so weak I've been unable to open my own eyes. What keeps me going is the love of my kids and family. I know what it's like to lose your parents and I can't do that to them so somehow I find the strength to keep going. My specialist still has me in the "red zone" but I've no plans to stay here.

So why am I writing this all down? It helps me to journal sometimes. I find that if I get those thoughts out of my head and onto paper then I don't have to worry about them any more.

I just wanted to tell my story too. If people want to read it, then thank you. 

I actually haven't said too much about this until now as I've been putting my energy into healing and breathing but it's time to tell the story. It's important for us all to realise that we all have our stuff going on, especially now. Just because we don't shout about it doesn't mean it's not happening. Life is not a competition, all of our experience is valid. To dismiss someone as being "dramatic" is both childish and selfish. We're all struggling with something, it's important to listen, to hear, to feel and to be less harsh on others. With a bit of luck I'll get the operation I need soon and I'll recover from this flare up,( though I'll be on my meds for life) and I'll get out of the red zone and back into the green zone.

Hopefully it will coincide with the lifting of lockdown and we can all get back to some kind of life.