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I have been struggling to keep up with messages and comments recently because high pain levels affect sight. As you can imagine this makes writing and reading challenging (more so if you’re dyslexic). The photo editing isn’t too bad, but I suspect that’s because I’ve been doing it for about 20 years so it’s become much more of an automatic process.

One of the comments was on my video of me making a cup of coffee with my hands partly clenched. I was asked if it hurt when my hands are like that. Short answer is yes, it can feel like my hand is in a cramp. However there is more to it than that.

Partly clenched hurts the longer it’s in that position. My fingers contort into each other and it’s a very tight grip. Two or three fingers will be uncomfortable but I can cope with it. My hand fully clenched is a lot harder. Depending on stress levels it can get to the point that my fingernails are digging into my palm for hours. If that is the case, as you can imagine, after a while cramp sets in across the whole hand.

It’s uncomfortable, but I began getting my natural reactions back about 20 months ago. Over time I have adjusted and always try to find a balance where possible. It’s not always within my control but my wife and daughter are amazing. I am, and will always be grateful for them, I think that every day, they change my life. So I can live with the bad days and not having control of my hands. The good days are more than enough to balance it out.

All my best and love

Ross

Words – Ross A Fraser

Graphic Design App – Canva


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The post last week referenced “Pain on a scale” because that is something that I have been thinking about recently. The pain scale is meant to be a doctor’s way of helping to determine how much pain you are experiencing. However, pain is relative and perception of pain can differ from person to person.

I have been in constant pain for more than 15 years. I had to fight to get from being bedbound to the point that I could even just get up without assistance. Retrained how to stand, sit, walk... literally had to learn everything because my centre of gravity, and therefore balance had been altered. This meant that unless I learned to adjust I was remaining bedbound.

I push the pain all the time and it often pushes back but if I didn’t my life would just be a bed and chair. My family means everything to me so I do little things but always want to do more. I just know that I have limitations and pushing them can have major consequences.

So this is my pain scale

1. Small burn or cut

2. Scalding

3. Migraine

4. More serious burn or cut

5. Toothache

6. Broken bone in hand

7. Always physically uncomfortable to move, any physical exertion needs accounted for

8. Always physically uncomfortable to move plus high chance of getting a blackout

9. Dizzy spells, everything takes a lot of effort and very high chance of getting a blackout

10. Unable to remain conscious, pain causing repeating blackouts until it reduces

That’s the same scale my doctor was using, right? No, very unlikely and that’s the problem.

All my best and love

Ross

Words – Ross A Fraser

Graphic Design App – Canva

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My mind takes in all the details of my environment. When I unmasked this caused serious issues in my day to day life. Slowly I learned how to store events to process at a later date. I realize now that if I am not given time to isolate and reflect I tend to lose all control over my emotional response. The area in my mind capable of storing details has limited space. Eventually it will reach its data limit. When this happens I burnout and no longer have the ability to process the world around me. If forced to communicate at this point my emotions have no filter. I become extremely sensitive to the world around me and meltdowns become frequent. Being a mom and a wife makes it difficult to find time to process. I am slowly learning how to lock on to the positive details and store the unknown till later. It is a constant battle for balance. The more I understand myself the easier it is to find tools to aid me through the chaotic moments. The most beneficial thing I have learned is the need for sensory breaks. Isolating periodically from auditory and visual stimuli allows us to process and helps prevent sensory overload. If time is money then wouldn't you want to provide sensory breaks? We all perform best with a calm, clear mind. Even a computer functions best when we take the time to clear its cache. This is Me - Jeni Curtis ❤️ 🫂 ❤️ Be You


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