What I have Learnt From My Life Limiting Illness

As I have mentioned before, I have a fused neck, symptoms of M.E., a pinned shoulder and degenerative spinal condition.  I am also in constant pain. What I have learnt from being ill/disabled is that you are seen (or unseen) as invisible, unintelligent and a drain on society.

Not All Disabilities are visible or defined by age:  I do not look disabled (just small). The main comments I get (and this includes from vaunted medical professionals) relate to age: You are to young to be this ill and therefore shouldn't use certain services etc. Especially during COVID certain services just didn’t take into account people my age or with my health issues.   You can’t see that I am in pain, but I am. Just like people with other invisible disabilities  my disabilities are dismissed or minimised  because they cannot all be seen.

There is a need to be competitive: I have extreme fatigue, for example, certain people are at pains to tell me that they get tired to sometimes, so I should either take a nap or push through it.  If combating fatigue was that easy there would be no need for most of the M.E. services, we could fix our selves!

"I'm sure if you really tried you do ...". Yes I really want to live a restricted lifestyle, I should just try harder.  I and my physio know exactly what I can do, the one time I tried to push myself I smashed my shoulder.  Restrictions are there for a reason.

People can be tactless, insensitive and feel they have the right or knowledge to comment about every aspect of your life. You almost become public property, asked about all aspects of your life then proffering their (unwanted)  opinion.  

Someone always wants/envy  my life. Apparently I stay at home all day, potter about and relax.  It must be fantastic.  In reality I would swap in an instant and you would hate my life.  I miss human interaction, working, going out. When you have a long term illness friends drop off, busy with their own lives. I exist in an insulated boring bubble!

To combat all of the above, I always try to look for the positives, no matter how miserable I am feeling, but in a perfect world I wouldn't need to!

Review: Ability Superstore & Classic Canes Petite White Summer Floral Walking Stick

My mum was lucky enough to win a Classic Canes walking stick in a recent Ability Superstore Facebook competition.  She chose the white summer floral petite folding walking stick (the summer range also included an ergonomic handled stick and standard walking stick in various summer floral designs. 

It came safety packaged within a few days and my mum is very pleased with it. The stick is adjustable from 32-35" and it is handbag sized so fits in her Kipling cross body bag. The stick has its own plastic pouch and it is easy to fold up and pop in. My mum has rheumatoid arthritis in her hands but she says the walking stick handle is comfortable to hold as it is small and fits into the palm of her hand (I have put a photo comparing the handle with my black petite Classic Canes walking stick which is wider and larger in size). The stick is very light in comparison to her NHS one.  The stick itself looks very summery. The bright flowers look good against the white background and contrast nicely with the gold hard wear. My mum found it easy to adjust the height  of her stick - she just pressed the little gold button and it slid into the next hole.

Since winning her stick she has bought several items from the Ability Superstore website. She found it easy to navigate and find what she wanted and the items arrived within a few days of her ordering them.

She/I would recommend the Ability Superstore and will use it for future purchases. The turn around on delivery is quick, the site easy to navigate and the name is great! They also run regular competitions via their social media pages so it is worth keeping an eye on them!

The item was won in a competition but the views expressed in this blog post are my own.
Ability Superstore Facebook Page

Ability Superstore

Walking Stick Holders

Ever been in a very quiet restaurant/library/shop where it is so quiet you could here a pin drop, you hook your stick over a chair or on a table only for it to fall off and noisily clatter to the floor. I, for one, have to wait for someone to pick it up for me as I cannot bend down and I also have ruined several expensive walking sticks as they have chipped upon landing.  The same goes for walking frames and wheel chairs. How can walking sticks be secured but still be within reach without risk of them falling off and getting damaged, mammoth struggle to retrieve them.  All the options I found are available on Amazon UK.  There are some cheap options that get good reviews. I especially like the reflective strip (under £6 including postage) as it fulfils a dual purpose.  It secures your stick and also acts as a reflective light when flipped down to rest against the stick so acts as a great safety device as well.

All these items are available on Amazon UK. 

Tommy Hilfinger Launches Adaptive Clothing Range

Tommy Hilfinger have launched an inclusive clothing range for people with disabilities.  1 in 5 people in the US and UK have some form of life limiting disability yet they largely neglected by the fashion industry.  TH has already launched 2 collections for children with disabilities in partnership with Runway of Dream, a foundation which aims to promote inclusivity within the fashion industry.  

This range of adaptive clothing is designed to make it easier for wearers or their carers to easily get dressed  and for the clothing to fit around orthotics etc.   The range consists of 34 women's and 37 men's pieces.  They feature wrist loops, velcro closures, magnetic flies  which can be fastened with one hand and magnetic zippers on top of specialised leg hems to take into account leg braces and orthotics.  The jacket, pictured above, for example, fastens with velcro. The range is designed to be wearable and fashionable for wheelchair users, people with prosthetics, limitations or restrictions in movement etc.  I find getting dressed to be exhausting and have trawled online shops for clothing that looks fashionable but is easy to get on and actually fits comfortably over my shoulder and neck braces whilst not getting tangled up in my walking stick! I only hope that other fashion retailers follow TH lead.

The range is already available in the US and Hilfiger hopes to eventually launch the range worldwide.

Disability: The Ultimate Invisability Cloak

When I "became" disabled I had the novel and often frustrating experience of using a wheelchair, then walking frame and finally a walking stick (permanently).  I have seen both how differently people treat you depending on how disabled you look and how other differently able bodied people see you within what could be called a disability hierarchy.

I was in a wheelchair for 6 months when I was unable to walk and I was definitely invisible. People would look over my head, pretend I wasn't there and sometimes dramatically sigh if they had to walk around my chair. People would also talk over my head and ask my companion if I would like ..... Hello it's my legs that don't work not my brain and voice! Of course some people were nice, treated me no differently but on the whole I was, maybe unintentionally, made to feel as though I should be grateful, where just a few months previously before my accident I would have taken such interaction for granted. 

Other disabled people treated me as one of them as I was obviously disabled - nothing screams disability more than a wheelchair, neck brace and partly shaved head! I was never asked to "prove" my disability when using my blue badge or hospital transport to one of my many appointments! 

When I moved on to a walking frame much of the above still occurred, the only difference being that I now had a potential implement in my hands that I could use to mis-manoeuvre into people's ankles if they were dismissive of me, then smile pathetically and croak that "I hadn't got the hang of it yet"  I  still didn't get asked for "evidence" that I was disabled when using my blue badge/ disability services but I had defiantly moved down the disability hierarchy, hearing muttering that "she can walk" and "she doesn't need as much help as me".  I wasn't talked over anymore but people still talked slowly or would sometimes ask my helper to confirm what I had just said.

Finally I have moved onto a walking stick (hence lots of posts about fashionable walking sticks).  They are great for tapping people gently out of the way when they expect you to walk around them (I can only walk forwards so it's never going to happen). I have to zig zag down streets yo avoid getting knocked over, which is exhausting and my stick regularly gets kicked by other shoppers invading my personal space!  I still get the sympathetic glances and the "but you look normal when you sit down" comments when I have to explain what is wrong with me. I don't get talked over my head anymore .

When using a blue badge / disability services I have been told that I am not disabled enough/ I am too young to need them and they need it more (disability never should be a competition).    

This is based on my personal experience and does not aim to be a monologue speaking for  all disabled people. 

Sticks & Stones: #owl be yours!

Sticks can sometimes look very similar despite being made by different manufacturers. The floral stick, for example , can be seen in all mobility catelogues. There are some fun looking sticks around but you must always consider the safety and comfort aspect when selecting a stick like those I've put below. Some of the owl heads are more fun than comfort- I certainly wouldn't want to grip an owl's head for more than a few hours and I am not sure if the etsy and the umbrella sticks would be any good safety wise for me as I put my full weight on my sticks, as I use it both for support and balance. They are fun though and would be great for anyone who likes owls!

Jewellery wise there is lots of choice. The owl jewellery I chose off Pinterest ranged from £15 to £2000 for the diamond and carved owl ring. None of these look particularly twee or childish but would complement any outfit perfectly. 

All views expressed in the blog post are my own. 

The owl sticks can be found at:

https://www.completecareshop.co.uk/walking-sticks/dress-walking-sticks/corinium-walking-stick-owl-view-large?gclid=CIKD9PmZ6M4CFRATGwodPjYHeg

http://www.healthandcare.co.uk/novelty-canes/imitation-ivory-barn-owl-hardwood-cane.html?gclid=CNTJxJya6M4CFawp0wodJcYKJw

https://www.etsy.com/uk/listing/220244312/hand-carved-walking-stick?utm_source=google&utm_medium=cpc&utm_campaign=shopping_uk_en_gb_a-home_and_living-other&utm_custom1=04b48d49-bdac-488d-9da9-e8cc3fb19ef3&gclid=CNemt7Ka6M4CFcgp0wod0KcBZw

http://www.wilsonwalkingsticks.com/na-wildlife.htm

https://www.soake.co.uk/collections/coynes-collection/coynes-owl-stick-umbrella.html

The jewellery can be found at: 

http://www.notonthehighstreet.com/?gclid=CKKcr5yc6M4CFcsp0wody0YFMQ&dclid=COnn1Zyc6M4CFfAD0wod4QkHQQ
http://www.alexmonroe.com/?gclid=COu8j_mb6M4CFYgYGwodydMEEA
http://www.neimanmarcus.com/en-gb/AMEDEO-Diamond-Trim-Hand-Carved-Owl-Cameo-Ring/prod164050164/p.prod?ecid=NMAF__Hy3bqNL2jtQ&CS_003=5630585
http://www.bluefly.com/

Glam Sticks and Stones

  Continuing my sticks and stones series I am going to look at glam, sparkly sticks and stones in my quest to find fashionable walking sticks and fabulous jewellery for every occasion. 

  Today I am looking at Glamsticks (a link to their website and SM is provided below) which makes glam, sparkly walking sticks (folding or non folding), crutches and White canes.  Glamsticks was established by  Debra Deboo and is now owned by Sharon Farley-Mason. GlamSticks won the Disability Motoring Product of the Year 2011.  There are lots of designs - Chameleon, SparkleStick or GlitterWings to name but a few, or for an extra £5 you can design your own. As each stick is hand painted and the diamanté put on by hand they do take several weeks to be made, but they are well worth the wait.

I think the most important thing to note about the founder and owner of Glamsticks is that as they are disabled and understand that the sticks/ crutches need to be both comfortable and stylish. There is no point having an eyecatching stick of it is uncomfortable to hold. In the about Glamsticks section Debra stated that she "wanted to look fab" and Glamsticks certainly do that. Hospital sticks, whilst they do the job, are grey and don't make you feel better or glamorous. Whilst a sparkly stick won't make you better it will certainly make you smile and feel glam.

Jewellery wise you can either look like a glitterball and go for all out sparkle - paste jewellery can be found at all price points from QVC UK, Debenhams, Accessorize down to Claire's Accesories. Swarovski is more expensive but if you just wanted to put all the focus on the stick and one piece of jewellery that would look great too.

All views expressed in this blog post are my own. 

Glamstick links:

Website: http://glamsticks.co.uk

Twitter: @Glamsticks 

Facebook: https://m.facebook.com/GlamSticks/

Jewellery Magnetic Closures: struggle no more with wonky clasps!

Due to spatial/ hand coordination issues I find it near impossible to fasten jewellery clasps. This hindered me from wearing my favourite jewellery as I couldn't fasten/ unfasten my jewellery without asking for help. I then saw some magnetic closures when searching through jewellery findings on Amazon UK. The clasps fasten on to the jewellery's original clasps and the magnets are extremely strong. These clasps would be great for anyone who likes wearing jewellery, but for whatevever reason, arthritis, poor coordination or spatial awareness or if  you just have long nails and don't want to chip or break them doing up a clasp. 

As you can see from the mini video below my hands are very shaky when I try and fasten clasps together so these magnetic closures, once attached, make my jewellery life so much easier!

The clasps can be found on Amazon, ebay and all online jewellery finding shops. I bought mine from both eBay and Amazon and they were both under £5 for a pack of 10 including postage. They come in two different shapes - a ball and a longer thinner more tubular shape and are silver or gold toned. I found the longer one easier to grip as I have longish nails and find it difficult to hold small objects. 

The only issues I have with the clasps are: they are only gold/ silver toned so cannot be worn all the time and the clasps do not sit flat so can get caught or knocked quite easily. I find myself checking that the clasp hasn't got knocked or pulled apart quite regularly, although it hasn't happened yet!

I bough these items myself and the views expressed in this blog post are my own.