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.

Sunday, 6 October 2019

It’s not falling down that matters,it’s getting back up that counts!

This image made me really smile this morning, I had woken up feeling nearly human determined to have a good Sunday,happily making our cup of tea and getting my cooking station ready for soup making later. Then I saw my beautiful flower stem broken and a little droopy. I smiled to myself because if I am completely honest this is just how I am feeling today.

The second week of being the carer hasn’t been as easy this is understandable as I started week 1 all fresh and ready to go week two I started absolutely knackered, as usual there has been tears and quite a few, I haven’t actually grown gutters down my cheeks yet and I am still deep down cheerful. I just have to accept when this get a bit too much for little old me my eyes leak they always have and probably always will.

I have had times this week when I have been overcome by how much kindness and love people have been showing, I have really enjoyed wrk this week I was really not sure how I was going to manage I didn’t feel prepared enough and didnt know if physically my body would be able to do it.

I arrived on Wednesday and a very special person had set up the room for me I really did feel like a princess all I had to do was what I do best sit and talk. Thursday was the same and even came home Thursday with a soup made for us both. Thursday afternoon and evening I fought hard to stay awake but you know what next week I am going to bed after lunch as I obviously need more rest than I am having.

Friday I thought I got this list of jobs in hand off I trot. Parsnips roasting in my convection microwave which is truly amazing, it’s a grill a oven a microwave and any combination I would like it to be. It’s at a height I can put things in and get things out by myself. I did two different types of sups for Clive and to be honest was feeling rather pleased and a title bit smug I got this cooking lark can do anything now I have taken the time to learn how to use my oven.

Ok I thought let’s make a batch of apple and cinnamon muffins I love them, apple grated just got scales in my hand to weigh my oats all I had to do was one step, one little step across the kitchen where I don’t have anything to hold, that just had to be the point when my right quadriceps muscle thought nope can’t do anymore, it did no more than just that relaxed all muscle power gone, neither leg can support me on their own so over I go. Does Amanda fall like a normal person no of coarse not I fall forwards I can’t quite get my arms down either so the point of contact with the kitchen floor was left eyebrow then left hand and left shoulder. There is very little muscle or padding on my shoulders so not a soft landing.

Then the fun starts, we have a system Clive and I , I say I am alright it’s ok which is code for that bloody hurt but please don’t try to move me yet, or I am bleeding but ok same as the first or am hurt which basically means whatever you do Clive I am going to hurt so just get me up please. The problem we had was Clive can’t get me up, ha ha did the stop us nope. I managed to get to a sitting position and kinda walked on my bottom to the bedroom one cheek at a time, took ages. Then Clive lowered my bed to the floor and I got on my knees not sure how, this is the genius bit Clive very slowly raised the bed and I managed to move my feet inch by inch until my legs where straight and my belly was laying on the bed. Just typing this I really don’t know how my legs did that and what a site I must of been. I then used my cot side to be able to stand up.

Job done apart from the tears obviously it is me, I did finish the flipping muffins too, I was so determined it wasn’t going to stop me doing my jobs so I could go to camera club. Which I did and really enjoyed myself.

Yesterday was going to be a rest day my body was a little bit sore, however Seabass had other ideas she was being I little rascal but to be fair to her i hadn’t had chance to take her for a walk fr two days. Of we trotted and I was having a lovely time just thinking what a beautiful sunny day it was when......disaster number two happened. Seabass saw some horse poo, now I think to a bulldog this is like me seeing a massive chocolate brownie, she was off backwards towards the road, me in the chair going forwards so she pulled me over to the left side the arm rest of the chair flipped up I really thought I was falling out the side, so I kinda threw my body over to the right unfortunately my right hand was holding the controller, this meant I shot forwards at full speed until I hit a garden wall. How I didn’t fall out forwards I really don’t know. Seabass’s lead around the wheel again. This time a lady did come and help me. I smiled and thanked her and drove off  after a checked the wall was still standing. Seabass sulked the rest of the walk and I tried to relax and not cry. To put the icing on the cake when I came into the house unfortunately so did half the dirt from the village.

I now have a muddy carpet, a bent wheelchair and properly fed up and a very sore body, I did what I do best tried to carry on and started crocheting my ELF and called my mum n dad to come and help which they did, do feel bad they both 81 and still looking after me.
Today I am not surprisingly very sore muscle wise but I am also very happy and so excited, I have done Clive a soup made with frozen veg no peeling or chopping mash potato done to go with my fish and veg have obviously sat doing this blog which I love doing, i remember saying if it helps just one person I will be happy, well it is it’s helping me.

The excited bit ,I truly can’t type fast enough ,Clive my supper duppa best friend ever has booked for us to go to Wembley on Dec 22nd to see Elf again yippee but that’s not all we are going backstage to see the cast oh my goodness I am going to meet Elf . Just need a baby sitter for Seabass she never any trouble. So this afternoon I am going to do some more crochet and I am definitely resting all day.

It doesn’t feel like it this weekend but as my mug says I am winning at life.

Tuesday, 1 October 2019

Progress not Perfection

Is it wrong that a 49 and 3/4 women should be so excited for seeing her name on a virtual balloon on Facebook. Well I am and it really made me feel so warm and fuzzy inside that my beautiful niece had taken the time to watch it and screen shot me.

This is all to raise awareness of LGMD which is the sub type of muscular dystrophy that I have been chosen to have.
I so wish I had done this blog this morning I was feeling very proud how well we have both coped between us.

It is one week post op for Clive and no I haven't had time to sit and blog but we are doing really well.

Please don't get me wrong we have had a huge amount of help from everywhere and even though it's very hard for us to ask we have and we are really great full.

I am so proud of me no tears yet, nearly had them today but didn't. I have been using my long handled poop scoop, works really well and even managed Seabass's walks. If I am really honest I have really enjoyed taking her for a walk. Ran over her toe yesterday because she was being a dafty but no harm done. I can't believe how tired I feel when we come in, her new harness is working a treat with me holding her. I dearnt attach her to the chair in case I get her tangled in my wheels again.

I have really enjoyed making Clive all his homemade soups, well I peel and chop the soup maker does the rest. Its really hard work though picking it up and washing it. I have my little routine though and I am doing just fine.

So glad I prepared so well before hand so I have lovely meals in the freezer all ready. Need to really watch though as now I am really really tired this is when I usually stop eating healthy, however knowing this will enable me to make sure I don't go that way.

Today we have been back to the hospital for a check up and the catheter out all went well, however I did notice how tired my arms are I couldn't open the toilet door no big deal but usually I can. Then I went for a little tootle to M & S for some cheese, Clive can now suck or melt cheese, I so nearly bought some yep you guessed Brownies but I didn't I bought mango instead. When I got to the till couldn't lift my arms to scan them, this didn't upset me in anyway but it does show me how tired my arms are.

Got home was just going to have a sneaky lay on the bed because yes I am tired and oops Seabass had done a wee. Seabass must have an enormous bladder that's all I can say.

Now this did make me nearly cry and wish I had bought chocolate Brownies. Lots of deep breaths and the bedding been washed. Just trying to dry it on the radiator.
Think as soon as its dry I will be in the bed, the spare set is currently being washed and dried for me. It's was clean bedding Seabass.
My other good friend just been round to put my bottom sheet on and coming back to do the duvet cover. I am truly blessed to have such lovely friends.