Sunday, 8 December 2019

Its Christmas For Us Too

Well I have had a fabulous weekend, busy but really good fun just what I needed. Camera club was really good haven't had chance to look at my pictures yet but that's ok.
Saturday morning  was spent doing grown up things like ironing. Last night really couldn't sleep because of such horrible pain in my right thigh another bit of muscle dying, really is get difficult on my right leg now.
Today we have had such a lovely day, nice visit from one of our daughters so I quick trip to Asda.
Now I am going to try not to moan and it's not just Asda and it doesn't just effect me. As I always say it's not just about me.
Why oh why is it suddenly OK to fill every aisle with all the big containers full of chocolates, wrapping paper extra everything. I get it everyone likes to buy a little extra but how are we supposed to get past, it's hard enough at the best of times. Now we have to negotiate everything in the aisles as well. That's if we can even get into the shop, these pop up stalls and markets ice rinks etc are fabulous but most have a little step so no good for me.
Was helping in the kitchen when my stupid right leg decided to give way fell forward and really head butted Clive very hard in the middle of his back. Was great for me did hurt but not as much as hitting the deck, didn't do Clive much good though.
The three of us are off to Nottingham in the morning to the Christmas Market. Hopefully will have some pictures too.

Friday, 6 December 2019

Its just such a busy time for Elves

I truly can not believe that I haven’t done one single blog since the 9th Nov and it is now Dec 6th, it is such a busy time of year for Elves, I am actually gutted that I haven’t been able to keep blogging but tiredness has got in the way.

There is a tiredness and then there is this Muscular Dystrophy Tiredness I have been greedy and had both, I also needed a bit of time to think through some thoughts. I absolutely love my little blog and I started this to try and help encourage people to be able to just be their selves, to try and help increase awareness of living with a disability and I suppose to try and smash some of the stereotypes about life in a chair. The one thing that I didn’t actually think through was people that actually know and care about me read it too, this is were the problem came I started to worry on the impact it might have on them which has kinda made it really hard to write recently.

I have so much I do want to do with this blog and I am determined to continue with it, I still haven’t spoke about my trip to London and I have been on a training course on my own, ok no big deal at 50 but I haven’t been able to do this for a very long time it was good it felt grown up.
I want to write about how acceptance is the key and using equipment gives us so much more independence, this isn’t something we can fight it isn’t about giving up or in. I have absolutely no control to how this will progressive physically. Muscular Dystrophy will win physically it is doing but I will try my best for it not to get me mentally.

I have had to come to terms And say farewell to some more muscle in my right thigh it has finally given up ,which means I can no longer move my right leg independently, its taken a couple of weeks to get into the swing of things but my left foot (how profound) is getting very clever at hooking itself around my right foot to move it, jeans are also great for man handling the leg to move it where I would like it to go.

This silly tiredness I have been talking about is nasty its not like that feeling you get when you have worked hard or been for a nice walk etc when you can sit down and feel glowing its different, its when you feel physically sick and either fall straight to sleep when you stop for a minute or you just haven’t even the strength or attention span to do anything nice, its kinda hard then not to feel irritable.

Its hard to tell if the tiredness is because I have been doing so much more with Clive being ill or if it is another progression of the Muscular Dystrophy, so I am having to take stock and really consider how and what I want to use my strength for, which isn’t an easy thing to do at all.

I did decide to stop blogging which in hind site was the wrong thing  to do for me, because I do enjoy it so much , not sure it has helped anyone but it was helping me. 

I absolutely love this picture too, yep it is a Slimming World Picture which is another massive part of my life and I have purposely not mentioned it , I do think the dog could be Seabass. I feel like I have missed so many opportunities to bring my world of Elves to life as I really do love this time of year . I actually can feel excitement in my fingers just typing about it. 

I am now going to go and get ready for camera club and I feel so much better already



Saturday, 9 November 2019

Wish everyday could be holiday

Even our own cotton buds


It really does feel ages since I was in a lovely routine with life . I have really had such a surreal few weeks. These are some pictures of the hotel bathroom we stopped in, I am a little disappointed that I didn't take more photos but I was so busy trying to take it all in. The hotel was simply amazing the bathroom had been done so lovely,  I have been in so many so called accessible bathrooms where the only thing they had actually done was put a plastic hand rail in.
I appreciate that all disabilities have different needs but one of the things that really annoys me is when people think we don't deserve it to look nice too. This bathroom was just gorgeous plenty of room for the wheelchair the large sink at a useable height.
The grab rails and handrails made of chrome not your discoloured white.
The shower curtains clean and a beautiful shower seat that if I had wanted to use I could of done.
I am obviously home now and hope i can remember everything i want to record. One of the things I did notice is my sense of direction is appalling and my ability to find my own way has disappeared. I really need to rework on this. I think it may be because the last few years when I was trying to walk I could only do it holding onto someone and with 100% concentration I couldnt look where I was going or concentrate on anything but staying upright.  Then when I was in my other chair I was pushed around somewhere during this time I have lost the skill of being aware of my surroundings and finding my own way around.
I was so bad Charlotte had to keep saying to be me stay in front mum so I can see you. This was hilarious as that is what I used to say to her as a toddler.
We did attempt the underground which for me was very very scary, we couldnt actually get on the tube because of the gap between platform and tube. We could of asked for assistance with ramps etc but we chose to walk and use the buses.
I am going to rethink my blog of london as I am tempted to put so much in and it may well get boring which would be a shame. I am well aware that at the minute I am still so very tired and trying to do so much and nothing very well . I might take a leaf out of my Bulldogs book and snuggle and sleep and just maybe have a little snack or two.

Paddington Bear Springs to mind

I am so so excited I can't believe the last couple of weeks they have just been so awesome. I haven't made time for writing my blog which is not good but as I say progress not perfection.

I have been worried about Clive and generally letting things get the better of me. I have never felt so special as I have this weekend. Everyone that I know have all spent time to make me feel a million dollars and I can't put into words how that has made me feel.
I spent last Tuesday and Wednesday preparing for my role of Slimming World Consultant hopefully to inspire my groups to hold onto their Christmas Wishes and achieve the weight losses they so deserve.
Um well things kinda didn't go to plan as I was a completely speechless when I got into group Wednesday it was all decorated for my Happy Birthday and cake

I am now 50 years young, I am embarking on an adventure which is both exciting and scary. I am determined not to let my nerves and panic spoil it though.
I haven't slept since Friday and it's now Monday morning, well of coarse I have slept a little bit here and there but I have been just so so excited.

I am currently sat on a train on my way to London have never been on a train in my wheels before. I have read lots of scary accounts on how hard it is to travel in wheels. So far so good arrived at Derby easy peasy met by the most smiley platform lady with the ramps which to be fair the ramps were nearly as big as her. Safely on the train heading into London inside my tummy keeps flipping over think it's called over excitement. Going to try and blog little bits and take lots of photos. I really love this new chair and my new confidence.


Saturday, 19 October 2019

Look After YourElf.

Wasn't sure if I was going to blog today. I have had a couple of days feeling like I am not really coping very well, haven't been feeling sorry for myself but I have been feeling like I am not having much fun at the moment. I have just re read my last post and do you know what I am not doing too bad at all.

Wednesday was a real rough day, they actually came to mend my toilet, I was so excited but nervous too. I tried to keep busy while the engineers were working. I must admit it took me all my energy not to lose it with them.
Cor blimey I can moan but goodness these two, moan moan moan, all about this should be done in the factory too hard a job to be expected to be done at home. They hadn't been given enough time to do the job. I really wanted to march in and say if you stopped moaning and got on with it wouldn't take as long.
Excuse me what about me not having a toilet for 3 months, I didn't obviously, I mediated instead.
Lots of umms and ares have they mended it and we thought they had.
I was so relieved about the fact I didn't have to allow 50 mins to use my make do arrangement. I also felt totally exhausted to top it off was really disappointed how many of my Slimming World Members didn't stay to group. Normally it wouldn't affect me but this week it made me question whether I was the right person for the role.
The members that did stay were amazing setting goals and plans, they actually gave me some well needed food ideas and reignited my passion for food optimising, this too kinda made me think should be me inspiring members oops.

Thursday morning got up went to use the toilet, it raised up so I could sit on it then wouldn't go down again. Ten minutes of pressing reset I managed to use it and get off. I am afraid I did cry and didn't think I could keep going putting on my happy face. I sat on the bed thinking come on get a grip and I saw an envelope with some money we have been raising for #TeamJake. A little boy with cancer, it was the slap I needed if Jake can get on with it so can I.

Since then I have been trying to make myself do some things I enjoy, I am trying to really get my emotional energy recharged.

I have made myself go to camera club even though I wanted to go to bed, today I have cooked and eaten healthy. I have spent the day finishing my crochet Elf. I love him. I am so pleased I sat and did it rather than going to sleep.

Tomorrow I plan to go to a garden centre with mum n dad to look at Christmas Decorations. Now I am going to look at my photos from yesterday.

The toilet heaven knows when they will be back, however it will not beat me. I am a fighter I can do this and I have been 7 days without a fall. One feels on the cards but being super careful.

Will be going to bed tonight Happy that we are actually doing OK.

Tuesday, 15 October 2019

Not managing to even get on my lovely iPad much let alone have time to do any of my blog. Pleased to report however that things are plodding along nicely.

I did have another fall early hours of Friday morning I not sure how but I managed to fall forward into my wardrobe door and kinda slide down very slowly with my left eyebrow yet again taking most of the weight, no bruise or black eye.

The fall didn’t hurt at all but the getting up did, pushing up onto my knees really did hurt my arms big style.

Today has been a fabulous day, I have been to have carbon laser on my face again, Clive cannot help me do any transfers so today for the first time ever, I did my first side transfer from wheelchair onto the treatment couch. This involved elevating the chair to be at the same height as the couch and sliding across. It certainly wasn’t as easy to do as it is to type,the best thing about it was that I didn’t even get anxious about it, I kinda just thought I want this treatment so this is what I have to do,it wasn’t elegantly preformed but i did it.

We then went into Derby to see as you have probably guessed the knife angle,I must admit I am not normally moved by these things but I was today,there was a presence an aura around this awesome piece of art. It was extremely thought provoking,all these knives,all the damage done ,strange world we live in.
I nearly forgot, I wanted to continue my blog about how different I am feeling I didn’t once feel self conscious, I was happily moving around in my chair, elevating the chair so I could get a good picture,wait for this laughing and joking with an older gentleman when I was reversing about not wanting to fall down a pothole. This is so different to when I went with my camera a couple of months ago, I felt the whole world was looking at me. I will never know if they actually where or as I suspect it was me just being me.

I am really pleased too because I not only went passed the Brownie shop twice, I went into Thornton’s had a really good look at all the scrumptious chocolates and didn’t buy anything. I did buy  a couple of Christmas decorations as 10 weeks today is Christmas Eve yippee I am back,it officially Christmas planning time in Amanda’s world.


Thursday, 10 October 2019

Count your blessings.

Well strange picture you might think. This is my armchair with a box on it. Why have I put a box on it, it's so I don't sit on it.

Today I am extremely tired not your normal tired an MD tired it's hard to explain it feels like there is concrete in your arms and legs it really does feel strange, the muscles burn and almost feel like they are going to pop, a little like when you have an abscess just before it bursts when the skin feels tight and so much pressure.
 I really don't get this bit but then they twitch a bit, can't get the flipping things to work when I want to then they twitch when I don't want them too.
I am kinda trying to listen to my body it doesn't do a bad job with the muscles it was given. So I finished my Slimming World Work and was planning to sit down in my chair and put my feet up.

I sat in the chair, pressed the button to elevate my feet and the motor sounded but nothing happened. Not sure if I did anything wrong but I tried again there was a real bang and something kinda fell underneath.
Now this is a problem if you can not get up from sitting to standing. I was stuck. I could try and get on the floor and bottom shuffle to the bed again and try that. However I am sore today and just couldn't cope with even the thought of trying. So I cried a bit first.
I was comfortable already in my Pj's nice and warm, so I rang my daughter who came on her way from work and rescued her mummy. It's handy having a strong daughter who can lift me no problem.
I know it was so much worse for Clive because he so wants to lift me but that would so undo all his surgery.
I am currently sat on my bed just trying to stay positive, no armchair no toilet.
Mediquip is coming to look at my chair tomorrow and I just hope I don't get oh this isn't our standard raise recline chair. I know, it's been 9 weeks without a toilet, at least my wheelchair is OK. I can still sit in it in the lounge but the wheelchair isn't as relaxing so I suppose if the worst comes to the worst will have to stay in bed. At least that's my favourite place.
I am also really pleased because I haven't turned to chocolate or cake yet.
I had a sleep and then watched a film am so trying to stay positive, I really don't like being so dependent on equipment but you know what I have no choice, I am also trying to ignore my tummy I am just to tired to have to go to the toilet, oops have no toilet I mean my little wheelchair adaptation.
I am going to try so much  that my next blog isn't going to be oops I eat the world again.