Disabled blogger

Will anything ever go right for me……

Let’s go back to 8:10am today, Monday 18th October 2021……

I was ready…..

The kids were ready…..

The bags were ready…..

My wheelchair was ready…..

I closed the door and put in the key, which then did this……

Donkey princesses and no more….

I noticed the key was bent, looked at it, and next thing I know it is in two pieces in my hand. This is the last thing I needed as we were going to pick up Colby’s best mate on the way.

I had to think on my feet…. I came in, closed the door, pushed the sofa over the door and went out the back.

I sent Colby round to bring my wheelchair, it should have taken 30 seconds, instead they went the long way round and left me waiting, needless to say, I wasn’t impressed. They then had to just about jog to school so we were not late.

I got home and had to come through the back and get my chair through the kitchen which is a nightmare in itself when you have mobility issues.

The only key we now have is Dan’s and he is working, luckily my parents are grabbing the monkeys for me tonight.

I’m chilling on the sofa in my pjs and oodie watching tv.

Have a great week, see you soon

Lots of love xxx

Just a quick reminder – I am currently trying to raise money for a new electric wheelchair. Please go check my story out, and if you cannot donate can you please at least share for me. The link is https://gofund.me/03c3b97d

Disabled blogger

Giving up…..

Do you ever feel like just giving up? Like you don’t know where to turn, who will be there for you, who will help you……. At the moment I feel like giving up.

Everything is getting me down at the moment, and my mental and physical health are suffering. I have no energy, I am sleeping less than I normally sleep (I only get 3-4 hours usually), I’m in pain, my anxiety is majorly high (I cannot stand being in the room as Dan and the kids when they are eating Etc, it makes me want to cry) and I know that I am holding my family back.

There is so much stuff the kids and Dan want to do, but because I cannot join in, they don’t get to do it. I know it stresses Dan out because he knows the effect it has on me mentally, and then there is Colb, he wants to do so much and when we are snuggling on a night he will say “mummy I want to do……… BUT I know you cannot”, to see his face and hear the crack in his voice makes me want to cry.

What’s the point in this post you may ask, well to be honest I don’t know, I am just letting my feelings out.

If you get chance please could you pop over to my gofundme? If you cannot donate can you please share for me, or if you know of any charities that might help can you send me their link.

Sending lots of love from me to you as always

Sx

https://gofund.me/03c3b97d

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Handwriting is hard work!

Hey all, hope you are all well. We are on the second week of summer holidays for the kids (vacation for those of you not in the UK) and as you might have seen in one of my previous posts, I made some cards for the kids teachers.

An example of the card.

Now while I was happy with these, I didn’t like my writing, and I’m hoping I can sell some to raise money towards the new chair I want, which means it needs a lot of improvement.

I have decided I am going to try learning modern calligraphy, I have watched some YouTube videos, and I have a practice book and pen set (but the fountain pen hurts my fingers, I forgot what it was like to write with one) and had a try today. I am definitely going to follow the advice on Natalie’s Outlet

YouTube – https://youtu.be/Jzlx9TMCsVA

Instagram – https://instagram.com/nataliesoutlet?utm_medium=copy_link

I may also get some of the pens she recommended to make my writing better. These are my attempts so far

Not perfect, but happy!

Let me know what you think, and if you have any tips. Writing makes my hands hurt so so bad, but I want it to be beautiful for the cards as it’s the personal touch instead of a printed generic message.

Have a good day/week,

*mwah*
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Does anyone have £11,000 they want to donate to me?

I came across this absolute stunner on Instagram, it was being showcased by 3 Wheeled Rambler (https://instagram.com/3wheeledrambler?utm_medium=copy_link) and I instantly fell in love.

This as you can tell is the Trekinetic GTE, and it is just short of £13,000 and can be found here – https://trekinetic.com/

Oh my days I’m in love!

The only as you can tell is the price. This chair would allow me to do so much more. Don’t get me wrong, I love my chair and it’s great for day to day life, but my family are missing out on so much due to the fact that if it ain’t smooth tarmac, then I don’t move. They won’t to go biking, walk through the woods, go to the nature reserve etc, and either they cannot or I am left behind.

I’m not posting this post for sympathy, or money or anything other than sharing the stark reality of a disability and how equipment to enable our independence can disable it just as much by the cost. I only qualify for a manual chair, that my partner has to push me in, defeats the purpose a little.

Please go over and check out 3 Wheeled Rambler (link above) and trekinetic (https://instagram.com/trekinetic?utm_medium=copy_link)

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SIX whole week……. SIX!!!

6 week holidays start today!

Today my Mouse completed his last day in year 3, and my Moomin completed her last day in Year 1.

It’s been a crazy school year, the children spent January to April at home, and we had a few isolation periods too where they were home due to members of their bubble testing positive for covid. This has had an effect on the children (more so CJ than Moo due to his additional needs) learning wise, but they have both worked so hard.

We now have 6 weeks where the children are at home for their summer holidays. We have a few trips away planned, it’s Dan and Moo’s birthday (35 and 6) and I’m sure we will spend a lot of time in the garden (hopefully in the pool), going to the local parks, and in the back street with the kids next door and their bikes. The children next door are the same age as CJ (in the same class at school) and one year younger than Moo, and they get on great. We will also go visit my best girl and her mum (my sister from another set of parents) at the seaside.

Throw some ideas at me for good things to keep kids (8 and nearly 6) busy. I told them we may be able to make slime (but not bring it into the house), and we may go swimming to the new pool in Pontefract.

I hope all those with kids have a good 6 weeks – I might not have any hair by the time they go back to school – wish me luck!

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I couldn’t say it better if I tried👩🏼‍🦼

It says it all!

I came across a post on Instagram today describing how some wonderful young ladies (I have the same problem, but I’m neither young or beautiful – and we cannot forget young men who have the same problems as we do) have people asking them why they are in a wheelchair when they are quite clearly ambulatory. This is her post…

A Instagram post from Wishbonewords – please go check out her social media when you get chance.

https://www.instagram.com/wishbonewords/

Some of you may not understand what ambulatory means, this is a good summery taken from https://accessiblerach.co.uk/what-is-am-ambulant-wheelchair-user/

What is an ambulant wheelchair user.

Next time you see someone stand from their wheelchair, or someone who looks “normal” sits in a disabled seat on the bus, think about what they may be masking, the pain, the anxiety, the depression, they may have ASD and be in a wheelchair to keep them safe, without asking them, you just don’t know. Just because we can use our legs sometimes, does not mean we are not disabled or that we do not need a wheelchair, a bus seat, or a parking space. Please think before you speak!

My partner thought he was hilarious!
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Did you know – walking wheelchair user edition!

Invisible illness

I don’t know how many times I hear the words…..

“Why are you in a wheelchair when you can walk? You don’t need a wheelchair”

Or……

“Oh, you can stand up/walk you are just lazy”

Yes I can stand, yes I can walk, but I struggle to walk, it causes me so much pain I often cry, my knee caps dislocate with every step, and I have developed complications due to how I walk.

I have Fibromyalgia, I have Joint Hypermobility Syndrome (a form of Ehlers Danlos Syndrome) and I have Subluxating Displaced Patella’s on both knees with my left knee being the worst. For 2 years I walked with (very expensive) adapted crutches and ankle braces/insoles (to help keep my legs straight), and the crutches had shock absorbers in to try and take some pressure off of my shoulders, wrists and elbows. These worked for a while, but I have now developed shoulder problems, elbow problems, arthritis in both wrists, and I had carpal tunnel in both wrists, which were operated on by the amazing Sam Vollans and the teams at Chapel Allerton (left wrist) and LGI hand unit (right wrist) last summer.

I asked for a wheelchair from the NHS, but I only qualified for a transfer chair (that would need to be pushed) so I had to buy my own. I love my chair, it gives me a lot more freedom, (however, it doesn’t help with my coccyx pain from falling down the stairs but that is a story for another day). The chair folds down like a pushchair and fits into my little car great.

My chair was from Mobility plus, and I will add a link at the end for this and my crutches (this photo the chair had a fault – the guys are Mobility Plus replaced the chair for me no questions asked).

So, what is the point of my post – don’t judge a book by its cover, and if you have nothing nice to say, don’t say anything at all! Feel free to ask questions instead of making judgements, we don’t bite!

MobilityPlus+ Ultra-Light Instant Folding Electric Wheelchair | 24kg, 4mph, Lithium Batteries

Ergobaum 7G Long Term Folding Ergonomic Shock-Absorbing Crutches (Pair)