What do you see in the photo above? I have a smile, I’m posing for a photo, using a filter to make me look better, this is what I do day by day, I put on a face, I smile, I laugh, I do things with my kids, but in the background, what’s really going on…..
I’m thinking of ways to raise money to fund a new wheelchair I am desperately in need of as the one I have is not doing the job it was purchased for. I have researched so many charities to help my chair plight, but they are all turning me down.
I am thinking about how I am going to make Christmas perfect for my kids after missing out when I was having my treatment, and I also need to make sure they have all they need day to day.
I am in pain, but I’m always masking it, I’m so good at it it’s become a norm not a challenge, I have it down to a fine art.
I’m trying to run a home and make sure my partner and kids are fed and watered and have clean clothes and a clean house. That often means I go without things to make sure they are taken care of.
I’m thinking about the way society sees me and views me, do people talk behind my back about me? Do they think I’m lazy for not working, and I guess for asking for help to raise money for my chair, an item most people will say I don’t need, are they commenting on my weight gain from not being able to be active, do they say I’m lazy?
Anyhow, my point in this – when people say I’m ok, they probably are not ok, they just put on the “ok face” so think how you can help, be kind and be careful what you say as words can and do harm.
Lots of love Sxxx
If you could, please pop over to my gofundme, and even if you cannot donate, please please share it for me.
On my way home from the school run this morning I pulled up at the crossing in my wheelchair, as I do every morning we “walk” to school. HOWEVER, today wasn’t like a normal day, today my electronic brakes failed, and a wheeled out into the road. Luckily it was only around 50/75cm (but that’s too much) and cars went round me as I frantically tried to go backward onto the path, which just wasn’t happening.
It made me think how incredibly lucky I was, when I thought about what else could have happened, it could have been fatal. It was 8:45am, the middle of the school run/rush hour traffic. We know from experience that cars don’t always stop for things in the road at those lights (rip Moo’s pink METAL water bottle that she dropped one Friday on the way home from school) as they are simply going too fast or are distracted.
I know I keep pushing my link for my gofundme, but I realised today how important the new chair is, not just for my mobility, but for my safety. I understand people cannot necessarily afford to donate, but if you could share my link, or send me info of charities/people who may be able to help me it would be appreciated!
Every year on the 11th hour, of the 11th day in the 11th month we celebrate “Armistice Day” which marks the end of the First World War. This year it fell on Wednesday, however I wanted to save this post until today as for me it better suits today.
On the second Sunday of November, we, as a nation and several of the commonwealth countries come together to celebrate, and thank those armed forces personnel who have given their lives to serve their country and to keep me and you, and our children safe. Not only do we celebrate those men and women, but we also give thanks to their relatives who have been left behind.
We have a national service of remembrance which is streamed on the BBC here in the UK (you can find it on bbc iPlayer if you would like to watch – please do ask me for the link if you cannot find it).
The poppy has a vastly significant roll in the marking of this occasion, people wear poppies, decorate windows and their houses, lay poppies at remembrance memorials and much more. The poppy represents the landscapes of the First World War as many fields on the western front were covered in them. There is a poem called In Flanders Field which is beautiful…..
I have a brother who is a soldier, he was injured out in Afghanistan back in 2013, luckily he wasn’t significantly injured compared to many he was serving with however it has triggered his Fibromyalgia (we both suffer with this, and our Dad has ME). I am immensely proud of my little brother, and I thank him, his friends and colleagues for all they do to keep me, my family and our friends safe. Ben since being injured has got involved with several charities – I will link their websites at the end of the post – and it has helped his mental health so much.
One is Limitless Motor Sports, this charity provide track days for people with disabilities, and I am hoping they will be able to sneak a day in for me too, Ben is their go to mechanic, and a valued member of their team. He is hoping to progress to being allowed to handle one of their cars a bit more often.
The other charity Ben is involved with is Karting for Injured Troops. This is an amazing charity who compete in Go-Kart races all over the country, and even outside of the UK. Ben loves driving for the team, it takes his mind of the stresses of “real life” although it does add stresses for Karting life, as we have seen, however, he is fantastic at what he does and my kids were so excited to see him race and cannot wait to see him again next year.
Ben has decorated his helmet himself, and I know it is having its first outing at Silverstone today on the last track day to be held there. Ben is really sad as he loves the Silverstone track, but that’s the reality of life. I am going to add a few pictures of his helmet, even though it is not yet finished at the bottom of this post.
If you have got this far, thank you for taking the time to read it.
We had tie wrapped the corners of the cage together to stop them coming open, the little sod has chewed through the tie wraps and had a field day. This time however, we think she may have been gobbled by a cat. We watched her on our camera until around midnight then she vanished not to be seen again!
Also, if you have chance, please can you go over to my gofundme, and if you cannot afford to donate, please share, or suggest places I can approach for help!
Everyone needs self care in their life. It is essential to maintain our hygiene, but what happens when self care leaves you so exhausted that you literally cannot move.
I have just had a shower. I did the essentials, I washed my hair, and washed my body, but that was it. I look like chewbacca, my legs need shaving desperately, but just washing my hair and my body has left me exhausted, feeling dizzy, having minor palpitations, shaking and believe it or not, it makes me sweat – figure that one out!
I have a turban towel to wrap my hair up, and I have a hooded poncho towel that is designed for getting changed in public (beach/swimming pool Etc). I throw those on, and lay down on another towel so the bed doesn’t get wet, whilst my skin air drys. This is particularly helpful for my intertrigo to let air get to my skin.
I am not sleeping well at the moment, so I had a shower using my sleepy shower gel from Lush (it’s my joint favourite alongside Snow Fairy) as the scent helps me relax. I would love to be able to have a soak in the bath, but that is a no no, my bath chair doesn’t allow for soaking, hence having a shower. I’m also itching all over my body, especially my face, which isn’t fun. The itching is usually a pain response, but not sure what is triggering this today.
As we head into a new week what do you do to practice self care? Why not send me some hints that I can try out!
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……
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
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.