Tuesday, February 23, 2021

A little life update

So I don't generally do life updates anymore on my blog - something I used to publish a weekly but I've moved on from doing that. However I thought as there's been a bit going on and it's been a while since I did a little life update that I'd do one.

Life is still a struggle and my health especially my M.E continues to be a challenge. Most days I spend a lot of time in/on my bed as this is where I am the most comfortable and my symptoms seem to be more manageable. When I can I try to spend some time in other rooms for short periods of time such as when I play games with my family or when I did my Moomin jigsaw puzzle (see the post on 'What I've been loving lately'. I also try to sit on my bedroom floor too to do crafting and letter writing which allows me to spread out a bit more. What I learnt in hospital about activity management has helped a lot despite the fact that my health is still a challenge like for example putting a timer on when I start an activity so I don't spend too long dong it to the point of exhaustion and my planned rest periods and to know when I may need additional rest periods or rest days.


Positive things that have happened recently 🌈

I now have finally found a PA who has accepted the job; at present we're just getting the paperwork in order. In her interview she seemed lovely and really friendly and professional and I got a good vibe so fingers crossed. When she starts it's going to be such as help not just practically but it will help me emotionally knowing that I'll be able to wash regularly and have clean hair and be able to do enjoyable things like going out to post letters in the fresh air, or do some baking and eventually go to some social groups and the hairdressers etc.

I've had my first COVID vaccine!

Also I spoke with the orthopaedic surgeon a while back now and I'm on the list for the surgery on my toes under general anaesthetic as due to my hypermobility disorder I'm unable to have local anaesthetic. I've had my pre-admission appointment which I had last week. Now all there is to do is wait to speak to the anaesthetist and then wait for the letter with my admission/operation date. Hopefully the wait won't be too long.

Things are going well with the hypermobility pain clinic and it's amazing to be able to speak with someone who is so knowledgeable and understanding of my condition and to offer me support and advice.

I'm enjoying my blog and YouTube channel and it's nice to have found a routine with it and to have gotten to a point where I have regular posting days for both my blog and YouTube channel.


Finally my stepmum has also sold me her old sewing machine and she gave me my first lesson on it today and I made a hair scrunchie. It's far far better than my other extremely basic sewing machine so I hope to get back into sewing when I'm able to do so.

Tuesday, February 16, 2021

This post could save your life! // Fire evacuation - What every wheelchair user should know

Hannah is one of my favourite bloggers and YouTubers. I love her honesty and approach when she talks or writes poetry about her experiences and living with multiple chronic health conditions. For World Poetry Day a while back Hannah Guest write for me; you can find that post here.

Today I've been watching some YouTube videos and this video of Hannah's popped up and I'm so glad that I did watch this video.

Whilst staying in a chain hotel with her mum the fire alarm sounded and Hannah and her mum was unable to make contact with the staff in reception to assist Hannah in her wheelchair to evacuate the building; not knowing what to do and feeling stranded. 

Hannah's Dad is a Fire Fighter and they contacted him for what they should do should they ever be in a similar situation again. In the video below Hannah share's her experience of what happened but more importantly the advice her Dad gave to her about what anyone should do should they require assistance evacuating a building such as in the instance of a fire.

Some of the things I learnt from this video is to make it clear to staff that you require assistance, especially if you have a hidden disability or have a sensory impairment and also where to go and what to do and not do in the event of an emergency evacuation from a building. But also not to panic and know that there is always a protocol for ensuring all persons in a building whether that be a hotel or an art gallery is evacuated from the building.

I would honestly urge you to watch this video to hear Hannah's personal experience but also to know what you should do in the event of a fire (like going to a stairwell is the last place I would think of going in my wheelchair if the fire alarm went off).

Tuesday, February 09, 2021

My Apple Watch

Photo of an Apple Watch. The strap is pink braided. On the digital watch face is the time, date, a calendar event and app symbols.
For Christmas there wasn't anything that I really needed especially as I'm trying to slowly declutter, especially when it comes to craft and stationary. I did however need a new watch and I settled on the idea of an Apple Watch already having an iPhone and happy with the Apple products that I own.

Originally I was going to get the gold watch with the dusky pink strap but taking my Dad's wise fashion advice I went for a silver case instead. Also instead of getting a buckle strap I decided to go for the braided solo loop - a choice that I'm glad I made as it is so comfortable.

My watch arrived sooner than expected which was an exciting surprise and the set up was super easy.


Apps

Not all of the apps on my phone are available on the Apple Watch but the apps that I do have on my watch is a good variety including fitness, medical, mindfulness, audio, home tech, memos, weather and news amongst other miscellaneous apps.

Medical

Medically I do find the app very helpful. I really struggle with my memory so having reminders, timers and alarms on my wrist which I can't put down and forget really helpful; for example to contact my Link Worker, take medication or make note of any PRN medication, track my fluid intake or putting a timer on an activity so I can ensure that manage my activity levels within my limits.

Though not a medical device and it's not designed to be one my watch comes with an ECG, blood oxygen measurement and heart rate monitor.

It also has a sleep tracker and during the night it monitors my heart rate and blood oxygen levels; it also does this periodically during the day and during any exercise.

What I find helpful is that it will alert me if my heart rate gets too high or too low and if my bold oxygen levels get too low.

There is also a falls detector and if it notes an impact where I remain still you can have it set up to contact the emergency services. There is also a function where you can contact the emergency services. And like with my iPhone my Medical ID Info can be accessed.


Fitness

This is one downside to my watch as being fairly immobile I've found the inbuilt activity monitor a little obsolete and at times inaccurate. For example when I have a seizure it falsely notes this as activity and when I first got my watch I set it to wheelchair mode (as opposed to noting steps) and I found that it noted that I'd made propelling motions pushing my wheelchair when I hadn't.

I can switch it between walking and wheelchair mode so once I am able to go out I'd ben interested to see how it notes my wheelchair usage.


Watch faces

Photo of my Apple Watch. The strap is pink braided. The watch face is now different to the pervious photograph and now shows a digital analog clock with a pink and orange kaleidoscope watch face along with the date along the bottom of the round clock face.

There is a wide range of watch faces to choose from. The main watch face that I have visible is the one pictured above as I find digital clocks easier to tell the time (though I can use the Taptic time or ask Siri to read the time aloud). I also like having easy access to the apps that I use the most. However I can swipe across to see other watch faces like this moving kaleidoscope watch face.

Battery life

The battery life on this is fantastic, partly because I don't have the watch face permanently on. Occasionally I can go over 24hrs without needing to charge it! It charges quite quickly and I generally tend to charge it when I'm having my 3-4pm rest period as I need enough charge for it to last the night to allow it to monitor my sleep.

Miscellaneous inc Pros and Cons

Sometimes it can feel a hindrance having notifications pinging on my watch all the time as even the apps that I can't access on my watch for example Instagram I still get notifications about through my watch but that can easily be rectified but putting the do not disturb mode on. 

I like that it syncs with my phone for example receiving messages and be able to make telephone calls. 

One downside is that if my phones dies so the the syncing with my watch so I'm unable to make or receive phones calls for example.

I like easy access to apps like being able play a podcast or mindfulness meditation but it requires my wireless headphones as it doesn't play out loud unlike with telephone calls which play out loud and have a receiving speaker.

I do like the 'Breathe' app which is a 1 minute breathing exercise which I find helpful when I start to feel anxious, 


Accessibility

This was something that was putting me off getting a smart watch but on my watch I do have the large and bold text options turned on as well as magnification and for some things like messages and the time I can get Siri to read things aloud.

The photograph shows a text I sent to my Dad with the magnification turned on which I can do with two taps of my fingers and then I can move the screen around to read the screen. The magnification level can be increased or decreased. I could increase it more but the setting I have it on is comfortable enough to be able to use my watch whilst also being able to move the screen around to see/read the screen.

This was one thing [visual accessibility] that was putting me off getting a smart watch but to be honest one this I do like about Apple is how accessible their products are compared to when I've used other technology brands so Apple is the brand I'm drawn to for that reason and just like my other Apple products my Apple Watch lives up to being pretty accessible.


Final thoughts

There is much more that I could say about my Apple Watch. There are cheaper smart watches available but personally if you have an iPhone already and you're thinking of getting a smart watch I would recommend looking into getting an Apple Watch.

All-in-all and personally I do throughly love my watch and it feel that it was a great thing to ask for help buying one for Christmas.

Monday, February 01, 2021

February's Monthly Make - Macrame Keyring

This month's crafty tutorial make is a macrame tutorial.

Difficulty level ★ ☆ ☆ ☆


What you'll need

Cord/string

In the video I used Heptique 1mm hemp cord and 2mm waxed cotton cord but you could use any cord or string really; I've use parcel string in the past to make a hanging plant pot holder. 

Beads

I bought Craft Planet wooden beads; they cam in an assortment of colours, sizes and styles and I've found them to be good quality. 

➜ Key rings

You could use ordinary split rings or you can get ones with a clasp and loop or D-ring

➜ Scissors


Video tutorial



Just a note...

If you have ever given one of my 'Monthly Makes' a go please send in a picture of what you have made as I would love to see your creations. Just email your creation to hello@agirlcallednaomi.com