How Do You Understand DIFFERENT Types Of Pain?
Hello warriors, how are you?
It is week 3 of my new TRAINING programme. Yes, as sick as I am, I can now say with confidence that I am in TRAINING. I am working with my Physio twice a week and to be honest with you; I don’t think I could have done this type of training prior to now.
We had to find my baseline and it took 3 weeks. That’s 6 appointments, it might not sound a lot but when we first started I did 3 sets of an exercise simply lifting my arms to chest height and moving them slightly back. I became bed ridden.
This is going to sound awful, but its true. If I had gone to the NHS to do this Physio I would have quit after week 1. There is no way they could have provided me with the support I needed and got from my Physio.
I am not sharing his details yet. We planned to wait until I can show major improvement before we come out of the closet so to speak LOL. The reason for this is, currently I have pain increases and my life is totally impacted by what we are doing. It would give the wrong impression of his skill base.
Anyway, he has had to check in with me DAILY to start with. I have never had to do this level of team work regarding my health. The only thing he is not tracking is my bowel movements hahahaha…..that hurt my ribs!!!
Its so scary getting worse. He has had to coach me massively to help me understand my pain more. I was obsessed with diagrams as that helped me with my rib pain (during COVID I had to do 18 months to be able to extend my ribs so I could cough or I would die – great motivation).
He has had to teach me about the following and we are still in the ‘just started’ category:
Ligaments – their job and what happens when they are flared up
Tendons – their job and how to try and figure out if they are hurting
Cartlidge – its job and how stiff it gets
Superficial pain – is it muscle pain, surface pain, deep pain, etc
How joints work
The difference between my arthritis and other arthritis (this blew my mind, and I have forgotten it already as it was confusing to me as I thought I was more similar to other arthritis)
So much more
So. When we do an exercise I have to give my pain and fatigue levels:
Before
During
After
And this pain thing is a right fucker. Some parts of the body don’t hurt right away, so after the exercise we can be chatting and suddenly I am like:
‘Hang on, getting an increase in pain’
So, he asks more questions. Now, I spend most of my days helping people with PIP Claims, so I spend so much time talking about ‘type of pain’. I thought I was quite ‘helpful’ and pretty good at this. Clearly, I have learnt that I know 0.2% of pain knowledge and how to explain it!!!
Trying to understand is it arthritis pain, muscle pain, ligaments, tendons, in my mind, cartilage, muscle pain……now obviously its not possible to figure it out fully. But it is important when chronically ill, to be able to figure out if its my condition OR is it GOOD PAIN.
Are we working parts of my body that should be worked.
We turned a massive point on Wednesday. We figured out how to do the arm movement without really triggering my chest pain. Unfortunately, it is simply ‘chest pain’ and if I had not been to hospital so many times for ECG’s, pericarditis and got the experience I have. I would have gone to hospital so many times. But, I am a pro at chest pain now LOL (bit of a sad laugh there!).
We managed to get me in a position to do the movement and I FELT IT IN MY MUSCLES!!!!!!!!! In the muscles across the front of my shoulders and across the top of my chest and my top back.
Now those muscles were a smidge shocked. It was quite funny to be honest, I must have looked like a rabbit in the headlights as I was so shocked it worked and I could feel GOOD PAIN.
Yessssss!!!!!
In the above photo, don’t I look happy? And dare I say: healthy? I am actually stuck. I am on the ground in a field. I really needed to lay down. But as you can see its flat. I cannot lay flat, I can’t support myself on my elbows and I can’t lay straight down on my side as that is too painful and I need pillows to support my body. So, I had to stay sat.
I only took this photo after about 20 minutes when I started to feel a bit better. I am so pleased you are reading this. I feel like I am learning a lot (with my clients as well) how images get judged by some people and send the WRONG MESSAGE.
I look normal, well, outdoor girl, happy, pain free. My mind is blown. Ok, I feel like I have gone off on a tangent (shocker lol). There will be a video soon to explain why this is really on my mind.
Big shout out to code name: UNDER CAUTION. I am thinking of you.
Back to pain differences. There is NO ONE teaching us about this and how the fuck to improve our quality of life.
OK, I am giving my Physio a code name: CENTURION
CENTURION and I are working on a series of videos to share his knowledge and our experience so hopefully other people with chronic illness can improve their quality of life as well.
Achievement of the week
Managing to stay AWAKE all day after my Physio session is more than a weekly achievement. Sticking with CENTURION, trusting him through this process and working as a team……I feel like this is my achievement of the decade. I cannot express how massive this is.
CENTURION also helped me understand that I am massively making progress. When our pain and fatigue levels increase its hard to stay positive. You cannot help but get more emotional.
So on our 3 week anniversary (LOL) I explained I felt ‘worn down’ and that I couldn’t carry on like this. My main areas of concern were:
Losing HALF my week = literally 50% of my functioning hours were GONE
Not figuring out my baseline for my ribs/back exercises
Not making progress with understanding my pain
Basically, being crap
Now, we track EVERYTHING (apart from bowel movements and whilst I think of it, we do not track ‘horniness’ but apart from these two….we are tracking everything hahahaha. Just to cover horniness, its rare due to pain and fatigue levels. When you are trying to get the energy to go for a wee, that is my only focus. Understandably.
Anyway, back to CENTURION. He really hmmmmm I am going to say: practically and in a chilled manner. Took me through the last week. And do you know what we confirmed?
I had done two 10 hour work days (that was why I was feeling like shit). I now do exercises EVERY DAY (not rib/back stuff – I only do that with CENTURION due to safety). Not only was I doing exercises. I had increased my sets.
We discovered my brain was holding on to week 1. I couldn’t get passed week 1’s impact.
Then he explained to me about pain and how you CAN induce a flare up. My heart was racing in FEAR when he said this. He then showed me that this is NOT going to happen as my numbers are NOT increasing. He checks my numbers every 3 days (now) as I key them to the spreadsheet, and we ALWAYS do a review together.
I AM levelling out. It IS working. Its still too high on daily pain/fatigue but we are not making me worse. AND we have figured all of this out in only 3 weeks. Its weird how CENTURION has to keep me focused on this, so the pain/fatigue internal war that is constantly ravaging internally does NOT take over my mental health. I am always battling this and I win, but I really need a battle buddy to be able to do this level of development. It’s a relief.
Sorry, as I go with this, I think this week’s newsletter might be a smidge PHYSIO focused!
What has made me happy
OK, stick with me on this one. There is FUCK ALL on YouTube or out there about how to build your fitness when chronically ill. When I say nothing. I mean where is the YouTube video showing the chronically ill person starting crap and then progress after Physio.
Where is the evidence that we do NOT have to give up. This is NOT the end.
What makes me happy (and a bit sad) is that my YouTube channel is doing so well. As there are not enough people that have disabilities proving that we have a future. Its different than we planned, but we are NOT done. I am disabled NOT dead!
So, CENTURION and I are working on a plan. We are going to fucking PROVE to people it IS POSSIBLE. We are going to SHOW the improvements.
And we are going to SHARE our templates and guides FOR FREE! We both have the same values, we both started our businesses as we wanted to help people. His goal is to help people reduce their pain. Mine is to help people improve their quality of life. That’s how we both word it. We both have the same coaches and aspire to get to the next level of coaches and follow their guidance as well.
Teamed up, this could be amazing. I really hope it is.
Books I have read
I started this one:
But, I am having to go slow as there are so many actionable points in it I keep having to make notes!
Also I got distracted as I tried this:
I brought a load of crafting things about a year before I lost my (traditional) job, so that I could try different things. I have to say: its not for me.
I mean FFS I have found jewels stuck to my arse cheeks AND in my commode. But now I have to finish it, I can’t leave it not complete. Then I am going to take it to the carboot and we can see if we sell it for £1 or something as its way too pink for my home LOL.
Arthritis update
I am not going to go into much detail here as I wrote so much in my ‘topic of the week’. My ribs, jaw joints and shoulders are the main areas of pain. When they calm down my right hip is well grumpy.
Over the next two weeks I have a couple of hospital appointments. One is with the Respiratory Physiology Clinic, this is as something keeps happening with my airway. When I am flared up, I get ‘episodes’ where it basically closes and I simply cannot get air in. Its very very scary.
I drop to the floor and it sounds like I am choking, loads of saliva comes out of my mouth (like just before you vomit x 5). I am heaving for air to get into my body and I can’t get it in. But my airway is NOT blocked. It has never happened when I am eating, drinking or even shortly after doing this.
It just happens when I am sat there or talking. Once it woke me up. My mum heard one of these episodes and thought I was choking so tried to pat my back (major pain) I couldn’t speak so it was hard to communicate there was nothing in my airway. After she witnessed it a second time, that was it. I promised to talk to my Specialist about it. I felt there was no point in going to the GP as I would sound like a dick as clearly my airway is clear.
I actually saw a different Doctor and straight away I explained, I know this is hard to believe and you cannot check anything as I am fine now. But, this is happening. She then spoke to my Specialist in one of their meetings and now I have this referral.
CENTURION mentioned something as I told him, I could feel a change in my airway after our rib/back exercise. I hadn’t mentioned it to him before as again, I felt like a dick. He very kindly, sort of told me off as I need to share ALL feelings so he can adjust the training. It was massively helpful talking to him as I was able to practice explaining it. I held my hands up as if they were the walls of my throat and did an impression of how it feels, like it is ‘shimmering’ moving. He said it could be a spasm or some kind. To be clear, he 110% expressed this is clearly not his job, I am right to get to the specialist. But it was helpful to then look at a diagram and consider the idea. I am now looking forward to this appointment! I feel more prepared.
The other one is with the Spondyloarthropathy Department. I mean what a fucking word. Basically, the arthritis department! It used to be called Rheumatology. Hopefully this is to get joint injections. The challenge is there is only one man in the UK who is experienced enough to inject free hand into my joints and ribs.
They need to do a fully audit on my joints as this summer has not been a good one for me. So we need to figure out if my arthritis is winning over treatment again. Or is it a flare up?
By the end of the month, I will know. I am worried about this, but I have shoved that in a locked box, at the back of my brain. Until the appointment.
PIP
I am angry. Please refer to the video below. And watch out for the video ‘Under Caution’, mind you, you will hear about it first here.
What I am looking forward to
I started writing this at 03:27 on 9th August (Fri), its now 04:37. I have two new client meetings today. I am looking forward to meeting them.
I am not doing the training session with CENTURION on Saturday (we train every Wed and Sat), he is flying on the day and I am happy to miss this bit of training LOL. I used his ‘need for a break’ to get out of it LOL. He would not drop the Wednesday session!
OK. By the time you read this, I should have done this. But as I type it, I am currently thinking this would be a mistake. BUT I want to see Tristan and Nat. These are two of my friends. Tristan and I first met in about 1999….WTF!!! Surely that cannot be right? I think it is. We were both collegues working at New Look Retailers warehouse in Weymouth.
Anyway, I got Ollie from them.
Its her second birthday this week and they are throwing a party for the litter. I missed the first birthday as some how I filed the chat group in, er…..archive of something. Anyway. I was going to cancel as its at 13:00. But Tris text me yesterday and offered to collect us and drive us home. They are very good at getting ahead of my challenges and offering solutions.
For anyone new, Tristan helped me pick ‘Gertie’ the shed I live in. Nat was doing me meals at one point and found my cups (with lids) that I use for literally every meal. Tris also has travelled with me to events before that I would not have been able to go to on my own.
This summer I planned on visiting them TWICE. I wanted to try and be more normal. You know go out and see friend. And Nat is the most amazing cook, she could sell her pulled pork for a fortune, so there is a massive bonus of amazing food as well. Anyway. I haven’t even been chatty with them.
I really really want to go. But I am so scared. I am scared I will crash. I am scared Tris will have to leave early as I can’t last and it will ruin it for him. I am scared Ollie will get carried away, they say do NOT train dogs together with litter mates.
Also, this is totally in my mind…..I think. I feel under pressure that she is an assistance dog and if she gets over excited, I will be judged. Being that time of day, I will not be able to be a good dog handler. I am sure she will get carried away.
I am worried she will do an alert. I am worried about chatting to people. OK, lets face it if I keep thinking about this I will psych myself out of it. I am going. If I struggle I can go with Ollie and have a sleep at their house. I don’t want to have to do this, but I think I need to remember it’s the back up plan and do NOT let my condition keep me at home. This is somewhere people get my condition and don’t flap when I struggle. So why the fuck am I so worried.
Hopefully next week you will see some pics from the party!
This weeks video
Take care of yourself
Charlie
P.S If any of you want to contact me, please email: charliesjourney2024@outlook.com
Code name: YOLO protects me, so she manages all email communication and attempts to make sure I do not over load myself LOL
To book an appointment with me: https://calendly.com/charliesjourney
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