Sunday 18 February 2024

Product review: MERU Flexzi 3

I recently bought the MERU Flexzi 3 which is a stand for my iPad (or it can be used for other devices) I’d been thinking about getting it for a while, especially after buying the Flexzi 1 stand which I attach to the frame of my wheelchair to mount my iPhone onto.

Like most disability gadgets it wasn’t cheap (I did get VAT relief on it so that helped a little and postage was included) but I can say that it’s one of the best gadgets I’ve ever bought.

It comes in either black, green or pink and extensions can be bought to lengthen the mount. It can be moved around quite easily in endless positions and with this product it comes with a part that can mean it can be clamped to a table as well as to a bar. Other options can be purchased from MERU such as iPad cases, additional Velcro patches and press buttons - depending on a person’s need. Personally I just bought online a clear iPad case to put my iPad into to attach it to the Flexzi 3. 

As you can see from the photo I just clamp it to the grab rail on the side of my bed. It’s designed well as sometimes I struggle with my hand function but I feel in the design process they considered the hand grip for tightening the clamp to be accessible to those with limited hand function.

The main reason I bought this was because I spend a lot of time in bed, especially reclined so I can manage my M.E. and symptoms like orthostatic intolerance, tachycardia and low blood pressure. It’s difficult to use an iPad or any device when you’re reclined or laid flat in bed. For so long I awkwardly tried to use my iPad in bed either trying to watch programs, videos, putting on an audiobook or podcast, typing emails or lists or blogging etc. Now I can put my iPad into the case mounted on the Flexzi stand and I can easily position it however I like depending on how I’m laid in bed and it’s just effortless. I can use my iPad as normal and it’s just made life so so so much more easy for me. Then when I don’t need my iPad on the stand I can take it out the case and put it in the case that doesn’t have the Velcro patch and use my iPad as normal, not on the stand such as if I want to take it to another room. I could even put a Velcro patch on a phone case and mount my phone onto this stand too. It’s totally revolutionised using my iPad from my bed.

As amazing as this product is and I’d still buy it I’d say the main downsides and possible barriers for some people being able to purchase this assistive device is the cost of the product even with VAT relief. For me it cost £80 which is a big chunk out of my PIP budget and I did have to save for it. Also the clamp is very big; I tried to clamp it on the other side so I wasn’t knocking myself on it but it really limited the movement range of the pink goosenecks so I would probably have to have bought the extensions so for not I’ve just put a small pillow to prevent unwanted knocks and injuries.

Despite the downsides I’d definitely say that the benefits that this product has brought me totally are worth it and it’s a product that I wish I’d gotten a long time ago.

I’d said for anyone who spends a lot of time in bed, or those who struggle to hold a devices this is the perfect product for you. With this Flexzi 3 you can clamp it to a bed rail, an over bed table, a wheelchair frame or table to name a few places. The Flexzi 3 holds the weight of devices such as iPads and other tablet devices and things like e-readers too.

Friday 26 January 2024

Book Review: “The Silence Between Us” by Alison Gervais

Rating: ★★★★★ out of 5!

Young Adult fiction is one of my favourite book genres because I like how it touches on many different life topics and challenges including, friends, family, relationships, education, careers, health and disability, social issues, political issues and more.

One of my favourite things about this book was how the author made the main character Deaf and I’ve never read any book before with a Deaf character let alone a main character.

I read “The Silence Between Us” as an audiobook though I felt it would have been better to have read this book as sometimes I struggled to follow the reading out of finger spellings especially with my dyslexia. Shorter words I could get like “name M-A-Y-A” but when longer names and words like ‘collapsed lung’ was spelled out I gave up trying to work out what I was listening to and backtracking over trying to work out what was being spelled out.

The book storyline is about Maya who became Deaf and her, her mother and younger brother who has cystic fibrosis move across the US because of her mother’s job. Maya isn’t able to join another Deaf School as there isn’t one close by so for the first time since becoming Deaf she has to go to a hearing school with the support of an ASL translator.

Maya is paired with a buddy, Nina, to help her acclimatise to her new school who she becomes friends with. She also becomes friends with Beau who learns ASL to communicate with Maya. Nina also picks up ASL too. I like how both Nina and Beau learn Maya’s language to communicate with her. This comes in helpful as Beau’s ASL is more advanced and one night Maya has to rush her brother to hospital and the virtual translation system is broken so Beau comes and translates.

I like how the author brings in aspects of the d/Deaf community into the book as after all the main character is Deaf. Some of the things the book touches upon are difficulties getting employment because of the employers responsibility to provide a translator, challenges in education including the lack of educational translators. In the book it also explores the differing opinions in the d/Deaf community as to whether d/Deafness is a disability or not and around the subject of cochlea implants.

As well the author writes about other hearing students attitudes towards a Deaf person. Such as at the beginning Beau asked Maya why she signed if she could speak orally. There was also an incident where Maya’s lab partner forgot she was Deaf and an incident happened and he said that he didn’t want Maya as his lab partner anymore because she was Deaf. There was also another incident were Maya lip read her being called a ‘token disabled chick’ when some students were talking about prom dates.

As someone with a disability I could relate in my own way to a lot of the things brought up in the book. Such as lack of access and accessibility and accommodation for our needs including the lack of funding or political barriers to us gaining access such as barriers in education and employment like in this book. Then there’s ableist attitudes and ignorance that again is another barrier and people not thinking about what they’re saying or involving us [disabled people] in conversations especially when it’s about things that directly affect us. Or people wanting to step into our world like how Nina and Beau stepped into Maya’s Deaf world.

I like how at the end of the book the author showed that d/Deaf people can succeed in a hearing world; it’s just a bit more challenging and there’s a few more obstacles to overcome.

One good thing about reading the book as an audiobook was there was an interview with the author at the end who did a Q&A and explained why she wrote the book and she explained how she was hard of hearing herself and wanted that representation in a book when she was younger. She explained about the character Maya and Beau, the two main characters and their different personalities and who she related more to as well as talking about her own experiences and challenges being hard of hearing.

Friday 19 January 2024

Making a routine for yourself

Due to my M.E. I’m mostly housebound but to manage my symptoms I have to spend most of my day in bed. This can bed hard especially when it comes to the structure of my day as days can often all blend into one. However I’ve found that giving my day routine and finding lots of different activities and doing a variety of activities that I can do in bed helps to give me the structure and stability I need to support my wellbeing. - I will do another blog post when I can on different activities that I’ve found can be be done in bed.

My routine is something I’m still working on since I’ve moved into my own home as I lost the routine I had when I was living at my Dad’s because my life looks quite a bit different now and I also need more support from PAs/carers (plus with them being here especially on PA days I have less free time in my day for doing the things I want to do on my own.)

I’ve developed a rough routine which my pain psychologist suggested I do and she suggested I create a good day and a bad day routine so I can switch between the two. Some days I can start off with the good day routine and end up using the bad day routine if my health takes a turn.

See at the bottom of this post for more about routines as like can’t always be a solid routine and sometimes we have to give ourselves and our routine a bit of flexibility.


Tips for creating a routine in bed

  • Have a set morning routine. For me I wake up at 9am and give myself half an hour to wake up, take my morning meds and sit up. Then at 9.30am I have my morning routine to do so I’ll have a coffee, check my messages and emails etc. Or sometimes (usually - I need to get better at doing admin in the morning but I’m not a morning person) I’ll do a low-level activity to get me started.
  • Pace yourself throughout your day. This is a useful blog post I wrote about pacing, activity management and rest with some different techniques.
  • Work out when is best for you to do certain activities especially high energy activities like getting washed and dressed. For some people this is in the morning for others this is in the evening. It also depends on if you can get out of bed and to the bathroom to wash and whether you have the support from carers or caregivers such as family to do these activities. Aids can also help make these activities easier such as shower chairs/stools or a bath lift. You might want to bath or shower every other day and wash at the sink in between or another great alternative I find for washing are Fresh Wipes which are some really good wash wipes that I find really helpful. 
  • I find with high energy and sometimes medium energy activities it can be helpful to limit how many of these activities you do in a day. - For me I have one ‘main’ activity a day (on my good days) that I do in the early afternoon when I have the most energy, what I do depends on how I’m feeling that day.
  • After high energy activities and sometimes depending on what I’ve done for a medium energy activity I find it helpful to have periods of rest in my routine, usually for 30-60 minutes the latter especially after a high energy activity so my body and mind can stop and pause for a bit. I never regain energy but resting just helps my body to stop so it’s not on the go all the time. 
  • Rest is different for everyone, for me I like to shut down and just lay and listen to mindfulness meditations and soundscapes. Other people prefer to do a restful activity. Here’s a blog post I wrote about rest. I find it helpful to have several rest periods a day, especially on a bad day just to help especially with my chronic fatigue.
  • Alternatively after a medium energy activities you could put a low-level activity into your routine.
  • Different people find different activities high energymedium energy or low-level activity and it also depends upon how you’re feeling that day and how much energy you have for activities. One day an activity may be low-level activity another day it may be medium energy activity or vice versa.
  • With high energy and medium energy activities work out your activity limit. This is different for everyone and also depends on the activities and how you’re feeling that day. Usually for me with a medium energy activity I can manage 20-30 minutes and I’d usually need a rest afterwards so I build this into my routine. It’s usually a case of trial-and error to work out your activity limit. With low-level activities I still have to remember not to overdo it and burn out so in my routine I usually schedule 30-60 minutes for a low-level activity. I find it helpful to put a timer on to ensure I don’t overdo it and go over my activity limit or I take regular breaks.
  • Don’t forget to put meals and snacks into your routine too!
  • It’s also good to have a set time to wind down for bed. Have a snack and a hot milky drink, do an activity that doesn’t involve screens such as reading, listening to an audiobook or podcasts, activity books etc. Then go to sleep once you’re feeling tired and ready for sleep.

Making your bedroom environment different between night and day can help with sleep as it can help your body feel like it’s in two different places even though you’re still in bed. This was a tip I was recently given during a sleep session for people with chronic pain.

Also from this session I got told that if you are able to try to get some daylight into your room during the day that will also help with sleep at night - I do know how hard this can be for those with light sensitivity and it’s something I’m personally trying working on and it’s tough going.

  • If possible have a set daily routine so you’re roughly doing the same thing each day (if possible) - this helps to give your mind and body some structure.
  • What I do is I have my daily routine in my bullet journal, but life changes like my agency care is at different times each day so I have my routine on my iCal so I can change it as well as colour code it.
  • Another great alternative that I also have a use is the Stickman Communications pacing magnet set so I can create my day on a magnetic wipe board with different coloured magnets that I can write on. This gives me more flexibility as I can change it for how my day ahead will look as well as changing it around during the day should I find my energy levels drop and I need more rest and lower-level activities. Also some days I’ll use a green magnetic for a particular activity and other for the same activity I may use an orange or even a red one.
Link to buying the pacing routine magnet set - I personally have found buying fine liner coloured or if not just black wipe board pens great and glasses cleaning spray is great for cleaning wipe boards! You can easily buy a cheap wipe board from places like The Range, Amazon or Tesco and other similar places. (This magnet set does come with VAT exemption for those eligible.)

This is my magnetic routine for today:

Thursday 18 January 2024

What posts would you like to read?

I will be updating some of my old blog posts such as those on activities, pacing as well as new post ideas such as sleep, routine (especially when you spend a lot of time in bed), favourite bloggers, awareness events around chronic illness and disability and more. But what would you like to read? Are there any old posts you want me to revisit? Or new topics you want me to write about? Email me at hello@agirlcallednaomi.com

Thursday 11 January 2024

Massages on prescription

I’ve been getting regular massages now for over a year. I see a lovely lady called Hollie who specialises in  complimentary therapies for people with health issues. Whenever I see Hollie no two treatments are ever the same because she tailors each treatment to how I’ve been around that time, such as if my lower back has been particularly painful, or my legs have been in spasm more or my circulation has been worse and so she’ll focus my treatment on those issues. Her treatment room is also a little more specialised especially the massage bed which is like a profiling massage bed, the head of the bed raises up and down as does the foot of the bed and the bed also raises in height so people can be made more comfortable when they’re having a massage or other treatment. Another thing I like when I’m having a massage is the fact that I don’t lay on my stomach, instead I lay on each of my sides hugging a pillow when Hollie massages my back and shoulders.

I personally feel that massages like the ones I get with Hollie and by people trained like Hollie should be more readily available and accessible such as on prescription because of the benefits massage can give to people, especially those with certain chronic health conditions that may have little other treatment options or conditions that may benefit from massage, just like you can get acupuncture through the NHS for certain health conditions.

The reason why I feel that some complementary therapies should be available are that I personally believe that care should be supplemented and that medication doesn’t work alone both for physical and mental illnesses. Other things have to be done alongside medication to treat a person’s illness for a positive holistic approach outcome and this in turn, through treating a person holistically or in a person centred way may reduce the patient’s reliance upon medication or may aid their care, recovery, or help to improve quality of life. Idealistically I feel the holistic approach would include the biopsychosocial model of care with things like complimentary therapies, allied healthcare services such as occupational therapy or physiotherapy, talking therapies and social prescribing alongside traditional medical practice care.

There are many complimentary therapies that can be beneficial and aid physical and/or emotional wellbeing such as massage, nail care, Indian head massage and reiki.


About and the benefits of complimentary therapies:

Personally these are the complimentary therapies I feel should be available to patients on something like a prescription for those with certain health conditions because of the physical and/or emotional benefits these therapies offer


Massage

Massage relaxes the muscles and soft tissue, it also increases the delivery of oxygen and blood to the area that is being treated as well as warming the area. Massage has been found to relieve pain, reduce stress, increase the sense of relaxation, reduce anxiety and generally aid a person’s wellness. In rehabilitation massage can also be used to assist with the repair of muscular injuries.

This is the main treatment I have with Hollie and I’ve seen a great deal of benefit physically over time. It also relaxes me reducing any emotional stress or anxiety I’ve been experiencing. Hollie works in a person centred way so she focuses on the issues I’ve been experiencing with my health at the time. I find that it does aide the relief of my pain and my circulation has been a lot better since Hollie has been working on improving that.


Reiki

This is a non-touch though it can be hands on depending upon the needs of the client; it’s a non-invasive and non-manipulative treatment which may benefit some people over having a massage. Reiki is traditional Japanese natural healing therapy that tunes into the body’s energies and chakras from therapist to client. Reiki works on both emotional and physical healing.

I’ve had reiki in the past and found it deeply relaxing and I found the lack of touch was helpful as I felt the benefit of what the therapist was doing but by not touching my body reduced my body’s hypersensitivity to touch that I was experiencing at the time I had the treatment. It’s something I’d definitely try again.


Indian head massage 

This is an ancient treatment practiced for over a thousand years; it works on the Ayurvedic system of healing. The treatment works on the the muscles, tissue and joints of the head, face, neck and shoulders. This treatment is especially good for stress, tension, fatigue, insomnia, headaches, migraines and sinusitis.

When I have my full body massage Hollie also works on my head, neck and shoulders especially to relieve my ‘migraine fog’.


Nail care

Certain illnesses or treatments for some illnesses can affect a person’s hands, feet and nails. Complimentary therapies to treat a person’s hands or feet including their nails can be beneficial cutting, filing and performing cuticle work on the nails as well as massaging the hands and arms or feet and legs can help with symptoms as well as aiding relaxation and helping clients to feel clean, refreshed, hydrated and soothed.

I think that this nail care complimentary therapy should be offered alongside allied healthcare such as podiatry as well as hand therapy, diabetes, oncology and neurology clinics etc.


Resources 

Complimentary and Natural Healthcare Council - you can find a therapist here

Amethyst Trust

Sunday 7 January 2024

The start to a new year

Something an old pen pal introduced me to the idea of was picking a word for the year ahead of you. I’ve chosen the word ‘enjoyment’ for 2024.

Something my pain psychologist introduced me to was ‘goals vs values’ so for example the goal of reading three chapters and feeling like you’ve failed if you get too tired and don’t read three chapters, or thinking about what you value and enjoy about reading and just value and enjoying reading.

I’ve decided not to set any goals this year like I’ve always done in previous years. Life can’t be predicted. I didn’t manage all my goals last year as I unexpectedly moved into my own home.

I’m just going to focus on what I value and enjoy. I enjoy blogging and YouTubing and I’ll just do it for enjoyment however many posts and videos I do and subscribers I get. I’ll enjoy reading however many books I manage to physically read; I’m just grateful I’m able to read books again, but audiobooks is still reading too. I value my faith. I also value my friendships and I made some wonderful friends last year who mean a lot to me.

I also enjoy having my own home and I feel lucky to have my own home at my age. I want to spend this year settling into my home more and enjoying it and making it more my own space and home.

One thing my therapist said to me recently is ‘you have limited energy, use it on things that are productive and helpful and positive’. My M.E. means I don’t have a lot of energy and I have to be careful with my limited amount of energy. Sometimes I don’t always spend it right; one thing is on social media. Sometimes I waste my energy on social media getting upset, feeling like I’m missing out and getting frustrated. So I also think that this year I’m going to spend less time on social media and focus on the people that matter like friends, pen pals and family and also myself.

Tuesday 2 January 2024

6 years of blogging

Today marks 6 years since my first blog post way back in 2018. 

Since then my blog has grown a lot over that time and evolved as I have. Back then my blog was named ‘Diary of a Zebra’ and had very much a diary format sharing my life and mostly what went on with my health. Nowadays however I’ve moved away from being defined by my chronic illnesses and disabilities; I’m still happy to say that I’m chronically ill or disabled but I don’t feel it necessary to chronicle things like ED admissions or write about hospital appointments. I still feel it’s important to write about my illnesses and to raise awareness of them but just in a different way; a way I feel is more healthy. Sometimes I’ve thought about taking down those old posts as they’re not ‘me’ anymore and not what I consider productive or healthy but at the same time my blog shows how I’ve changed over time. I also share less guest blog post too. Some of the guest posts like my old blog posts I’d consider unhealthy but I wanted to give people a space to have a voice and my blog was their platform to share their writings.

These days I more focus on a topic or awareness event and write about that. You may also notice that I post a lot less, this is mostly due to a decline in my health. I still love blogging and I want to continue writing when I’m able to to help raise awareness on topics I feel passionate about and to bring more awareness around the illnesses I have, something that is very much lacking especially when it comes to M.E. or indeed all of my current diagnoses.

I hope, health permitting, and to be more organised as well, to hopefully blog a little more this year than I did last year.

I feel grateful to the M.E. Champion Bloggers and being a member of that community as it gives my blog a bit of recognition as well as the occasional publications of my blogs in the M.E. Association’s membership magazine as well as the access to the group on Facebook (when I actually log on!).

So here is to another year of blogging ahead. 

PS - I still do accept selective guest posts so if you would like to write something for my blog you can contact me on the menu at the top of homepage.