Catching Up.

August 1st, shielding has "paused" for now. I'm going to be honest though, I'm not sure still that it's wise to go shopping or anything like that just yet. I've been venturing outside the house, even if all we ended up doing was hacking at those shrubs outside the front door because they were getting a bit wild (so tempted to run out and attack them with a strimmer but common sense prevails). It felt so strange being outside though after being cooped up.

One thing I had hoped to attend, but it was cancelled due to Covid-19 was the annual Transformers convention TF Nation. Instead, the guys behind it did a virtual event called "The Big Broadcast of 2020" (named after an episode in the G1 cartoons) and it was incredible. Hearing from writers, artists to even voice actors of some of the original cast, even a bit with Stan Bush who gave us acoustic versions of "The Touch" and "Dare" from the 1986 animated film, which was just perfect. Of course next year (hopefully) we'll be there and it'll be a fantastic weekend.

For me, being inside for so long has been a bit maddening really. I am still a very active person (well as active as one gets when in a wheelchair) and I really like doing things. I think that probably annoys Jace as he's always catching me up to something and I am very protective of my independence. I've been independent since I was very young, something that I am very proud of. I enjoy getting up and doing things. I've always tried to fight for my independence and push myself. Through the pain and breathlessness, to me its a challenge to overcome. And it's not in my nature to give in.

It's been such a long journey. Not always easy, sometimes I've felt like I couldn't do it anymore. Admittedly recently has been a lot harder. I've got a nasty chest infection and pleurisy. Like many people with brittle asthma, my lungs are scarred, they don't like exchanging carbon dioxide and oxygen and deep breathing is currently extremely painful. It's hard to explain as many doctors don't understand how painful asthma and it's after effects can be. The worst thing is trying to explain to a doctor who doesn't understand or have the knowledge of me and my specific case and feeling like you weren't believed or treated like a junkie or an addict because they don't know exactly what this feels like.

I don't want drugs. I just want to not feel like someone is kicking me very hard in the side when I take a breath. I want to sleep without being awakened by pain, which stresses me out as I end up getting up early and not waking Jace up as it's not fair to disturb him because I'm in pain. I don't talk openly on Facebook about it, purely because if I was to post to my page every single time I felt pain it would be constant and I think that people would get annoyed with me. Besides that, posting about it all the time and not trying to do something to ease it, to me at least would be counter productive. I'd rather find a way of coping and a way to ease things. I'll admit, right now is difficult as I'm generally not feeling great but I'm getting through it. Kind of. 

I've had to have some very frank and honest conversations with the doctors and even with Jace to uncover the extent to how I was feeling physically and mentally. Even admitting that there's been some very dark and intrusive thoughts about things I find very hard to talk about. The thing is, people who have chronic pain problems, often finding them difficult to manage medically, sometimes struggle mentally too. Having complex chronic pain which is hard to handle is rough, it's tiring and it does eat away at you. I'm hoping that the tweak to my long term pain relief will make things easier to deal with. But we have other options to look in to.

Til all are one

Wendy xx