I don’t know how honest to be….
Hello warriors, how are you?
I really wanted to start 2025 off in a positive way. I thought about writing about how the year has gone, latest achievements and a bit about Xmas.
But, instead of being able to get up and work for a couple of hours a day, on the 20th December I got COVID. I didn’t do a test to confirm, but it was like last time. The first 24hrs I was not able to communicate at all.
48hrs in and I started being able to get out 3 words together: ‘need sick bowl’
It hurt so much to talk, to even move. The good news is that I WAS awake for Xmas day, I feel horrendously guilty when I miss Christmas Day due to illness.
You know how much my mum and I look forward to our special food over Xmas (slow cooked lamb and steak and peppercorn sauce)? Well, I dropped 8lbs Xmas week as I was so ill.
But, again I just happy I was awake on Xmas day, so success.
I have been saying for well over 6 months now that I need to catch up on YouTube and get ahead. I managed to start recovering properly around the 29th of December. I managed to work for about 3hrs a day for 3 days. Yes!!! Finally on the mend. Don’t forget I truly started to recover from Hastings trips (September) around the 15th December.
So, I was like….thank fuck….I need to improve as I am struggling to keep positive. Then on the 30th….I crashed again. WHAT THE FUCK.
Back to being bedridden. I keep slipping back to vicious chronic illness. To the level that getting dressed isn’t even an option. What I REALLY want to do is fully clean myself after a bowel movement. But even this is not possible.
I did my Physio appointment and just started with: I am feeling sorry for myself.
I need a break. All I am asking is that I am able to:
Take the dogs out daily
Sit at my desk and be alert enough to work for 3 hrs (minimum)
If I can be at that level, its enough that I feel like I am achieving something and I am contributing. But I have not been able to consistently do this since way before September.
If you look at my YouTube channel you can see that I have not done a full step by step guide for sooo long:
I do not suffer from depression, but my condition does wear me down at times. I tend to look at things, bad things as they are in the past. I move forward. I do not ‘stack’ them.
You know when people do this as they say things like:
Its one thing after another
If it doesn’t rain it pours
I haven’t had a break
That’s NOT how I view things. Life is a challenge, there are always things going wrong, you move forward.
My theory is that right now, I am starting to come out of the induced flare up. I am well enough to worry about money, work, YouTube, this newsletter, etc. But still not quite well enough to actually do the work. So, I am in this circle of worrying and viewing myself as a totally failure.
Not being employed in traditional employment is an added worry. When I was working it was a constant fear of losing my job. It was very uncomfortable. At least I don’t worry about that any more. Now, I worry as there is no sick pay. There is no team behind me (yet) that can bring in income).
So, the good news is that I am getting better. As when I am really bad, there is no ommph in me to even worry about anything (other than getting to the commode).
John (my physiotherapist) and I have been working since July to try and improve on my life. Our goal is for me to NOT lose Jan – Apr which normally happens. But we did not anticipate my body shutting down in November.
Our goal is to slowly build me up. We knew at the start it would be a 2yr programme due to the severity of my condition. It’s the first time I have not felt alone when in a flare up. With Johns qualifications and personality, he (I think) actually gets my challenges more than anyone else in my life. So, not being alone is a new experience.
And I do believe I would have been much worse if we were not working together, as he can be objective and get me to pace more than I can see for myself.
FFS. I just realised I am trying to talk myself around. I am trying to reassure myself that its ok. I AM going to come out of this. I will be able to get back to at least 3hrs a day of work/functioning. But not yet.
Yesterday I did a total of 350 steps. That was it. But this morning I was able to get up at 0930 and today I took my mum to Tesco’s. I stayed in the car and called a friend….I had enough energy to talk to him! Hi Brian!!!
I don’t want all of you to think this newsletter is depressing. But I swore to myself I would be honest in this. I have never had so many severe up’s and downs, where my recover is not getting back to where I was, so overall I am declining. Its been bad. So, I really wrestled with writing this week as I don’t want to be honest about things if its going to have a negative impact on you.
I am going to keep working with John. Tomorrow I hope I can get up and work a couple of hours as I have a guide that is nearly finished and I need to edit it. But I am sure I will fail to have a video for this Sunday. I wanted to start the year fresh and do weekly videos and newsletters again.
Right. Hang on. I know I have already figured this out. WTF.
ADAPT. ADAPT and be stubborn as fuck.
OK. And remember, I still getting over COVID. My eating is no where near back to normal. Give my body a chance.
OK. I truly hope this was not ‘down’ for you. I do understand why 80% of people who suffer from chronic illness are diagnosed as depressed. Its very hard to stay positive when you are fighting so hard all the time.
I am still fighting. I have my bracelets on (mainly sent by you lot) and I can see positive things when I look around from my bed. And of course, I have Ollie on my left and Matilda snuggled on my right.
I will be ok.
Achievement of the week
I was able to take off my PJ’s, have a ‘wipe’ wash and put on clean shorts and top under my big fluffy PJ’s. It feels amazing to be clean and the ‘under’ PJ’s I was stuck in were not that comfy.
I was able to get to the field near my house this am, so the dogs got to have a good sniff and Ollie chased the ball for a bit. I hope tomorrow to go to our normal location so she can run with the pack and really get some fresh air.
I was able to film part of my new step by step guide!
What has made me happy
My mum loved the painting I made for her as her main Xmas gift:
I made it to a different part of the walk the other day:
I managed to take my mum to Tescos the day after I wrote this…..look at Matilda bless her:
Books I have read
This update is from the past few weeks:
John recommended this to me:
It was actually really good, once you get past how assertive Curtis is. He is another person that LOVES to learn. It did make me feel better when he talked about how people owe him money and they just won’t pay as they feel like their life is harder. And that the better you do the more haters you get. It was just nice to read it from his point of view.
I also speed read this as I am very focused and don’t dawdle or get distracted very much. I have always been very focused. Now, with severe fatigue, when I am able….I am all over the tasks. But if you struggle to stay focused and get things done, this is a good book:
Arthritis update
When my fatigue is as bad as it has been the pain is not so ‘visible’ to me, I don’t think about it as much or focus on it. I don’t have the energy.
I know my neck is bad and my jaw joints have been bad. My right hip has kept me awake quite a lot.
Right now, my worry is my mental health. I know as soon as I feel better in myself and can actually walk and work consistently, my ‘dip’ will evaporate! Come on…..come on…..lets get a bit of an improvement….pplllleasssseeee
PIP
I do have some good news on this front. For you, not me lol. Well sort of me as it makes me happy to do this.
I have nearly finished filming my new step by step guide for claim forms. I think there is over 12hrs of footage. I still have to finish filming the checklist for 10 of the activities.
I plan to launch 4 actitivies first, each week. I think I am going to do:
Toileting
Engaging with people face to face
Crap, I have forgotten the other two on the list. They are high point areas.
Then I will launch the FULL step by step guide.
If my body lets me, I will edit tomorrow. So the toileting one is ready to up load. Then, I need to film for about 2hrs, this will be ALL of the filming done. Then next week is all editing. It might actually take me 2wks to edit this as there is so much footage.
This is the BEST step by step guide I have ever done. I realised it’s 2 years since I last filmed a step-by-step guide. I realised that is way too long. I think I need to film them each year as I learn so much throughout the year, the guides get better and better.
If a miracle happens and I get some energy, its Friday as I am writing this. There might be a video link at the bottom of this….I hope there is!
What I am looking forward to
I just want to be able to take the dogs out and work 3hrs a day at my desk. Alert. Functioning. I hope it starts next week. I will be soo sooo careful to not push it too much.
I dare not hope for enough energy to do some dog trick training, or getting dressed. I feel like that is not a reasonable request at the moment. I just want my brain to work please.
This weeks video
I did it!!!!! Whoooo hooo
Take care of yourself
Charlie
P.S
WEBSITE:
https://charlies-journey.co.uk
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I have some of February’s bills money in my account, but not enough to cover everything. Hopefully I will be well enough to do some client meetings. Thank you to everyone that sent me something from this list. If you do want to send something, could it please be dog food/treats? Or cat food, that would really help xx
If you want to send me a little thank you (please do NOT do this unless you can truly afford it as I promise I have food to eat and can pay the mortgage x), here is my Amazon wish list: https://www.amazon.co.uk/hz/wishlist/ls/29P1EFQ3E47FW?ref_=wl_share