I have enjoyed a lovely mini break with my girls and Dan, to day we drove over to the seaside. Dan and the girls went on the beach to skim pebbles and look for shells etc, I was left on the concrete path that ran across the top of the beach, but I couldn’t go along said path because there was too much sand on said path. As you can see from the photo above, my wheels sank in, this was less than a meter into the path, and the chair refused to move.
They walked a fair distance down the beach to where Dan used to play as a kid on holiday with his nan and grandad, I was sat alone for about an hour.
You may ask why I didn’t just go up onto a different path and ride that way…… well it is because my wheelchair doesn’t go straight. Dan has to direct the chair while I press the control to go forward. The chair has a mind of its own. The breaks also don’t kick in quickly, ending in me on the floor, or as happened today, Freya on the floor under the front of the chair.
I know I seem like I am constantly moaning, and yeah, actually, I am, but wheelchair services don’t deem me as needing an electric wheelchair. I am hoping that the OT will be able to help when I see her, but I’m not hopeful!
As always, please consider donating to my gofundme, share my blog, and check out my other social media accounts on Instagram and Facebook.
You might have noticed that I have been extremely quiet for a fair time – that is because my physical and mental health have taken a major dive. My mobility is becoming more and more restricted, my foot is tilting more as I walk, which is then effecting my hips, knees and back, and the pain is now constant. I am also stuck in the house as my chair is not suitable enough to use on my own unless its at a shop or something where I am not near a road/slope, since my last post I have fallen out a few times.
I had a video consultation last week with the Chronic Fatigue Service at Leeds, and they have said they think I do have some symptoms of M.E however they don’t want to officially diagnose me, but they have put lots of things into writing to get my GP to do with me, this includes physio and Occupational Therapy. Hopefully this might help with my wheelchair needs as they can apply for some grants for me, however it still doesn’t mean I will get anything. I am speaking to a fatigue management nurse in April to see if they can suggest anything to help.
So yeah……. that’s where I am now. I still have my GoFundMe running. You can click the link to go directly to my page.
Take care, and stay safe, don’t forget to kiss and hug your loved ones, and tell them you love them during this crazy time in the world.
I don’t have words right now other than F*** you wheelchair services in Wakefield. Because I don’t need a chair for in the house then I don’t qualify.
My chair dumped me again the other day, and yesterday just stopped working in the middle of The Range when I hit one battery light, usually that gives me enough to get back to the car, thank goodness I wasn’t in the middle of the road.
I honestly don’t know how I am going to manage to get a chair that works properly and meets my needs.
So, the winter is finally here. It snowed quite heavily in my part of West Yorkshire on Saturday (much to my kids delight). Where I live the snow didn’t really settle, but up where Dan works still had a fair bit of snow this morning.
I didn’t do the school run this morning as Moo is still quite poorly and I don’t want her out in the freezing cold. My amazing friend Mel took Colb to school for me, however he insisted on taking his scooter and fell before he had got 50yard from the back gate. I told him to leave the scooter at home but he refused and I didn’t want to have Mel in the cold with her little one while he kicked off. Tomorrow if it’s like this he WILL NOT be taking the damn scooter, I will just have to deal with the tantrum!
I had a thought after seeing him fall, how am I going to manage with the icy and possibly snow covered paths in my wheelchair. We have already seen I can be thrown out of my chair (into nettle bushes and main roads) on a lerfdd red cat dry, sunny day, how am I going to manage when it’s slippy? I have already had one near miss when my brakes didn’t apply quickly enough. To be perfectly honest, I’m scared at the moment. I know I will soon find out, but the school run is going to be an apprehensive one when I finally attempt it.
I have to say, I went to Asda while it was snowing, and I was wearing my M8 Apparel hoodie. It is one of the warmest and cosiest hoodies I have ever had. If you get chance pop by their website and have a look, tell them I sent you! https://m8clothing.com/
Could you also take the time to pop over to my gofundme, and if you cannot donate, please give it a share, or recommend anyone I could get in touch with to help/ways to try and raise some money so I can get my new chair, it’s winter ready and would make me less nervous going out on my own/with the kids. https://gofund.me/03c3b97d
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!