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.

Tuesday, 24 September 2019

Today is the day.

They said everyone welcome at Slimming World.
Today is the day that I have been planning,preparing and worrying about for weeks,it feels really strange. Clive has gone into hospital waiting to go into surgery. I am hoping and praying he has listened and taken in what the surgeon has said. I appreciate it is going to be very difficult for him not to do things, for 15 years he has always thought about what he can do to help me making sure I don’t get tired etc. Now it is really important he looks after himself . The hard part for Clive is not being able to rush and carry 6 shopping bags at once and accepting that I can do it in my way and it takes me a long time but does it really matter.

It’s 11 am and I have completed my first challenge,fed Seabass without dropping her dish and making a noise. She is so funny she didn’t trust me she went into the hall , she so doesn’t like the noise. I actually sat in my chair which meant I could just easily place it on the floor. The bed is made , curtains open which might not sound much but is a challenge and I have done it safely. The washing machine loaded just waiting for these Pjs when I take them off.

The bungalow is so amazingly clean and sparkling I truly need sunglasses,love it. A great big thank you to my friend who came yesterday in her professional capacity as the dirt and grime buster. It is so funny I keep tidying everything away our bungalow has never been this tidy, also I must of wiped the kitchen work tops a million times.

The fridge is full of lovely looking smoothies for Clive when he comes home and my meals are all ready, chicken out the freezer for a tikka salad for lunch and leftovers pasta and tomato and pepper sauce for tea.

The only thing I have to do is wrap some prizes for Slimming World 50th Parties in group this week and do my final preparations, kinda wish wasn’t working to be with Clive but I will enjoy it even if it’s  going to be exhausting . I have so much help though ,it has really overwhelmed me how kind everyone is. I didn’t want to miss out on the fun in group which kinda feels wrong now,at the time I thought it was the right thing to do.

The decision is made and I am all ready to give all my members a 50th Birthday Celebration they deserve and I might as well look forward to it enjoy it have fun,then I will be happy for Clive. He might actually appreciate the fact I am not fussing over him and leaving him be. Who knows but I will go with the happy version guilt get us nowhere but stressed.  I am determined to get through this challenge as calm as possible.

Going to try and give myself good nutritional food but if the odd brownie or chocolate does happen to jump in my mouth all by it’s self I will not go into self destruct mode, fingers crossed. Really don’t want a hat trick of oops I did it again.

Feels strange but I might actually get to do some crochet today, I kinda feel guilty that I am just calmly sitting here blogging actually enjoying the rain,it is absolutely tipping it down. The ironic thing is I am waiting for a hosepipe to be delivered as the decking needed attention because of Seabass well we don’t need one now , the rain has sorted out that little problem

Saturday, 21 September 2019

Out without a baby sitter.

I actually can't believe the week I have had it has been like one great big whirlwind. I literally haven't had two minutes to just sit and relax. I am not complaining but I am learning very slowly and very painfully that I really did ought to listen to my body and manage my fatigue. The problem I have with this is, if I do the important grown up stuff first I am tired I would never do the fun stuff. So my logic is do the fun stuff first then you kinda have to do the rest whether you are dead on your feet or not.

Tuesday was great went to Trentham Gardens again this time I got much better photos thanks to my little camera lesson. Don't try and run before you can walk Amanda hello its me. However I am being a very good pupil and trying it this way.
Really enjoyed it, still found it amazing being able to wheel where I wanted to go not being pushed around he he little joke there.
It also reminds me I have done nothing to raise the awareness of the disabled toilets being rather inadequate.

Wednesday and Thursday were the usual work day however Thursday night I went out with the girls. Flipping excited or what, you have to remember I haven't done anything like that in about 15 years. Clive or daughter would have had to come, as much as I love their company it was lovely to not feel like I needed a baby sitter.
The girls I went with might think otherwise as apparently I was just a little noisy and over excited. Oh well I had fun going on the tram out for a meal and then to the Theatre.
I did run over my poor friends toe.

We went to see On Your Feet all about Gloria Estefan it was just so flipping amazing. The singing the dancing. I must say that I could really relate to her post accident scenes and in my opinion which I know counts for nothing was done very well, kinda how I imagine someone might of felt.
It also made me realise just how hard she worked to get where so is today. Very thought provoking.

I have another book I am desperate to read but have to wait. Its Margaret's autobiography the women that founded Slimming World and is still Slimming World, I know if I start it will get annoyed because won't have enough time to read it.

The rest of the Week has been so full with both of us doing the final preparations for Clive going into hospital on Tuesday.
We have tried our best to have great plans in place but we are sure to have not thought of something. It is going to be a very interesting few months. Not sure how much time I am going to have for things like blogging we will see.
I am going to do my best to look after me the best I can so I can look after Clive. It feels really strange me being the career and not the cared for.

I will just finish on this I am very proud of myself as yesterday I was incredibly tired and hungry I so wanted to eat high sugar high fat food. I caught myself and remembered what would happen I might have continued the binge until after Clive's operation and then I would have undone all the hard work of the last 12 days.
I am again a Target member under target and am aiming to stay that way while Clive has his surgery.
I can't guarantee there will not be tears at some point.
I am going to try to make this my moto. Just for the record I haven't heard a thing about them fixing my toilet.

Monday, 16 September 2019

It's been a good day when your biggest problem was burning the muffins

Had a really good thought provoking couple of days. Yesterday was a strange day woke up really positive and determined that I got this I can do this. Clive was out and I needed the toilet so I thought let's try my brilliant idea. Please don't worry I will not go into too much details apart from I need to do some clever adjustments. It wasn't the easiest thing I have done, kinda blocked the toilet with the amount of paper, 6 flushes all good.
When I had completed the task felt horrible exhausted and tearful. It took an amazing 55minutes to have a 💩.
By the time Clive got home my brain had gone into overdrive with what ifs etc and he got tears I can't do this crap.
During the afternoon I was thinking but I can still do it might be hard work but would rather do it that way then rest bite care or career's coming in to do it.
Then later that day had a lovely chat with a lady I have only known 10 months but she is just so flipping fabulous and is so wise and good for me, we spoke about how I will find a way to speed up, little things I could do, and most importantly does it actually matter if at the end of the day I am late somewhere.
And I am now aloud to buy my favourite things Candles.
Today has been fabulous started with a meditation session which I know sounds daft but helps me, and my goodness was I a grateful bunny because Clive could lift me on and off the toilet 5mins much nicer and so much less humiliating than yesterday.
Put dad on car insurance ready to be my Jeeves whilst Clive can't drive and my beautiful daughter came to have her first drive and learn how to attach her mummy in the car. She was brilliant just as I knew she would be, our world is our oyster now. I feel shopping coming on with cake obviously.
We just had to go for coffee and cake to have a good girlie catch up.
Came home to make muffins for our adventures tomorrow and me being me had the oven on 220 why I have no idea so they a bit crispy, they are currently on the shed for the birds to eat but out of reach of Seabass.
Now off to bed to get beauty sleep ready for my trip out to Trentham Gardens.
Feeling very grateful for all I can still do and all our wonderful friends that are all offering help when Clive has his operation only 7 days till have to be a big brave girl.

Saturday, 14 September 2019

The girl I wanted to be!

 Well today has been a really lovely day. I kinda half feel like I have managed to have a day being the person I was meant to be. Being all prepared cooking in my beautiful kitchen with all my recipes filed and indexed on my ipad.
It was nearly like this, except my recipes might have been kindly scanned for me this morning. 48 in about 30mins by Clive.
I seem to remember it took me about an hour and a half to do about 6. That is OK there are things I have got to accept I can't do very easily, so ask for help Amanda.

My day actually started with me having to get the ipad out because I couldn't for the life of me remember what I was supposed to be cooking. I was so pleased with myself on Thursday that I had scanned the recipes and done my shopping list on virtual Post it notes and emailed to myself. Little steps to paperless Amanda, after the shop yesterday Clive asked what I was making and I hadn't a clue.

Loved playing in my lovely kitchen haven't tried cooking in my car yet, I did it on my legs but was really careful. Did use the chair to peg out the washing and I remembered how excited I was the first time I was able to do it. I need to remember all I can do not what I can't then I am a happy girl.
 This is my achievement a hot chilli, chic pea and spinach curry, Kiri salad which is my new favourite.

Kiri Salad
For the record the scanned recipes are not all indexed I kinda got to try and work out how to do that, next little challenge.
A friend is going to try and help me with my camera which is fab news. Maybe I didn't hide my frustration as well as I thought. I am going try and except a little more help from people. I am not sure why I always have to do everything the hard way and on my own.
Hey would be nice if anyone would love to be a magic fairy with my ironing pile. I suppose that's what Sunday mornings are made for.
I am now off to play on my ipad and go to sleep in my freshly decorated bedroom and new bedding. Yes I know I am a spoilt girl.

Thursday, 12 September 2019

I am back to feeling amazing yipee

Well what a difference just 4 days have made, I really don’t enjoy feeling low but I have learnt through past experience that pretending to myself that I am ok when I clearly am far from it doesn’t actually help me.

The first step to me feeling better was realising I must be struggling as it really isn’t me to binge eat like I had been doing. I had stopped doing the things my body needs rest rest and letting my mind rest too.

I have given myself a bit of slack talked to friends about my feelings and fears. The next 6 weeks are going to be challenging, Clive will be the cared for one . It does make me feel panicked can I ,will I cope. I had got lost in those feelings so I couldn’t see how I was going to manage.

Every day I have really tried to focus on the positives in my life, have done my favourite thing made lists of the things I need to do and arrange the help we are going to need. I have felt really blessed all the offers of help we have had and I have promised myself I will ask for help.

I have just really impressed myself by learning how to scan recipes onto my iPad so I can then have all my favourite recipes in one place. It is something that I can do but flipping heck to me the iPad is heavy so gonna probably ask mum or Clive to spend a couple of hours helping me do them over the weekend.

The iPad is still causing me problems but that is because me being me thinks I should be able to be a professional secretary kinda wizz in a week.

So today when we arrived to set up for my Thursday Slimming World Group I had a fab idea. I thought it would be so nice and relaxing to take Seabass onto the field to have a good run around while Clive unpacked the car. It was amazing (yea I must be feeling better I used the word amazing) the freshly cut grass smelt beautiful the air was cool but crisp. Apart from the traffic the world was so quite. I actually felt free and alive, Seabass and I just ran around the field it was great.....until I noticed how much grass was stuck to the wheels oops.
I did drive around the car park and get a lot of the grass off however it did cause a giggle because as the grass dried it kept falling off all over the floor, Clive followed me around with a sweeping brush bless him . I would love to say he did it with a smile but that would be expecting just too much.

I have spent the evening in my pjs relaxing looking at my cooking books, my plan for the weekend is to make sure I spend time appreciating the little things and keep telling myself I can and I am doing this. One of my pictures from the zoo, I was surprised how quick he could run.
Progress is Progress

Wednesday, 11 September 2019

Should of bought shares in Tena Lady

I am going to try and not moan too much today. I am really tired but that's because I am still not looking after me properly.
I am not good at this listening to my body and resting.
Had a great day yesterday a trip to Chester Zoo with friends and cameras. Really enjoyed it tried my best not to get too frustrated because couldn't get the chair in the right position and then move body and focus the flipping camera. Love my camera but keep forgetting how to use it. Even forgot to take the lense cap off oops rookie error. It is harder than you think when your silly arms will  just not move where you want them too.
I did stay positive really enjoyed myself, would love a couple of weeks to just disappear into a really nice hotel with my camera and instruction book, no cooking no laundry no work. Like that's going to happen.
Feeling better as have 3 Slimming World Fabulous days under my belt I have planned, cooked all gorgeous nutritious food. I can honestly say I prefer it to the rubbish I was eating last week.
Has helped me prepare for this weeks Slimming World Groups understanding our triggers, so it was obviously meant to be my little detour away from Target.
I do have to have a little moan  they rang from the toilet company today to ask for the serial number of the toilet. They have decided after 5 weeks perhaps it's a good idea to order the part before they send two engineers out. I would love to say this isn't affecting my well being but then I would be just lying. All I can say is I should of bought shares in Tena Lady. The joys of being a disabled woman who has been weeks without a toilet.
I am trying my best to look at the positives in my life but it is difficult when your brain keeps forgetting your body can't do a lot these days and your bladder decides it's going to keep going into massive spasms which are extremely painful.
I am giving it the best chance by trying to look after it.
13 days till Clive's operation, lots to organise for this but I have my lists of things to do.

Monday, 9 September 2019

Oops I did it again

Well it’s been a really long time since I have felt like writing, a lot of things have been going on, some very nice and exciting some just plain pants. I can’t blog about everything that is going on because that’s just not kind or fair on the people involved.

I have been giving myself a bit of a hard time this past week, I have been in a total self destruct mode where my health is concerned. I have not only made unwise choices food wise I have purposely only eaten high fat high sugar foods. no fruit no vegetables just cake and sweets and biscuits, did I enjoy it no not really do I know why yes I do because I can.

Have I been kind to myself getting rest when I need it nope have I been taking time to meditate nope, have I been looking at the positives in my life yep you guessed it nope.

Think I have well and truly lost a bit of my fight but I will find it again and have started today how I want to continue my life. I can’t change a lot of things and I certainly can’t change people but I can try and change how I react to things.
It’s difficult because on one hand I don’t feel I want anything special just a happy independent life, not one where I feel I have to prove myself worth to myself or others, I realise this is how I feel and it is all part of my daft mindset at the moment.

I have had a couple of incidents that haven’t helped one was Seabass really hurting my thumb when between us we managed to trap my thumb around the lead squashed against the chair it pulled the skin off and me being me didn’t actually say I need help it really hurts I just asked for a tissue for the blood.
Seabass was really spooked because where we where was just too busy and noisy so I decided to take her for a little walk, some person drove their car far to close to us and I managed to get Seabass’s lead trapped around the wheel of the chair. We was in the middle of a busy park full of people having fun and not one person came to see if we needed help. It just got worse I dropped my phone out of my flipping reach. I eventually got Seabass unclasped from the lead but couldn’t manage to hold her by the collar to get make to Clive. I did manage to get to the phone and call for assistance but did feel a flipping nuisance and a great burden for spoiling the day.

I didn’t cry though until I got home, yesterday we went for a walk and I managed to drive right through dog pooh I am sure I can still smell it. Not major things I know but it’s the little stuff that always gets me. I am actually coping a little better about the toilet situation, still no news and Clive goes in hospital two weeks tomorrow. I have a plan how I am going to manage but it certainly will not be easy or pleasant and I don’t think it will make me feel like the person I thought I was going to be. I have to just man up and get on with it though.

So today in good old Amanda fashion my smile is on, meals planned and house tidy, I will soon get the hang of this acceptance stuff I hope.

Sunday, 1 September 2019

Who would have thought even tidying up is easier in a power chair.

What a day, not so sure yesterday was good planning. I had champagne breakfast, chicken fajitas, brownie and ice cream no I don't feel guilty it was all planned as part of some great celebrations, however I had not thought it through Clive was out for the day and the toilet still isn't fixed. I was a little concerned, however I didn't eat, my logic being if didn't stimulate the bowels with food would be OK. Pleased to say it worked, Clive home so no problems apart from I was just a bit hungry and not for healthy food, oops.

Another Fabulous thing I have released today, sorting out paper work etc is so much easier in the chair. I can't bend so normally have to sit on a chair to get anything out of the filing cabinet, then ask Clive to stand me up to move said paper work to another place.
Usually a lot of moaning tutting and just getting annoyed at each other takes place and yep tears of flustration from me.
Today sitting in my power chair I could move backwards and forwards get off the chair. It felt so great being able to tidy and sort out all my rubbish in my little cupboard stroke office all by myself. I can't remember the last time I felt in control of being able to do simple things for myself. Yes I am shattered but loved being able to do it.
Four massive bags of rubbish out feels so good, I am going to need help sorting my cook books but that's for another day.
I did have a few minutes looking at old photos, love this one of my very chilled out daughter. Not sure where those 20years have gone.
Really feeling positive, enjoying sorting out the clutter just hope we can sort the toilet in the next 23 days or I will be in a bit of a mess literally.

Saturday, 31 August 2019

Yes yes definitely disabled friendly!!!!!

A full day in heels check me out. It my sound odd but I couldn't wait to get my slippers on.

Today has been the best day ever truly flipping amazing enjoyed every second and its not over yet. Loved getting ready for a champagne breakfast to celebrate my baby daughter's 22 birthday. I could wear whichever shoes I wanted no transfers to be done, so I chose my killer heals.
 Not once today have I felt anything other than me. By that I was Just my Elf literally.
We all so enjoyed our time together just relaxing. Then after we had another celebration to go to, we headed to the intu centre. Oh my oh my power chairs are amazing for shopping, now I can manoeuvre it like a pro. My goodness I didn't believe it when they said I would soon get the hang of it but I have. No more egg incidents for a few weeks. 
I can get round those little Nick nak shops oh it's gonna get expensive. I left Clive in COSTA while I nipped yep nipped round some clothes shops. I noticed today how many people just smiled back when I beamed at them. 

I then went out for lunch oh this girl can Party with the best of them, I chatted to a little girl all about Santa and how I am actually an Elf. So today so far has been just flipping amazing loved every second out and about in my power chair and my heels. 

So proud as a couple of days ago was so looking forward to being able to go on a 5k walk with Slimming World Members. I checked it was disabled friendly and was told a definite yes, all on nice paths suitable for wheelchair and pushchairs. 

Well I beg to differ first hurdle went up the hill to cross the road no drop kerb, had to go all the way back to car park and up the road.  When I crossed to the other side, the gate was locked. Everyone walked round not enough room for chair. I decided I got this went up the bank but now how to get down, a lovely couple came and helped, the man knew a bit about physics and angles and the best way to get down whilst he held the chair so we didn't all tip over in a big heap. 
The walk continued in this fashion for what felt like a hundred miles, it was getting darker and mum who is 81 and I were so far behind. It was getting dark and cold, my mum bless her went into that mummy mode you know when you kinda talk to the child that everything will be OK while not quite sure yourself. 

I was so relieved that by this time Clive was on his way to met us but unfortunately he went the wrong way. Friends hubby to the rescue came and so did a couple of ladies from Slimming World. We came in to a torch light finish. It did bring back an enormous amount of feelings from my childhood always last to finish anything and always me needing the search party. 

I have been determined not to let it get to me and it hasn't. I have been looking forward to today. 
Next year I will arrange a walk for my Members and it will be truly inclusive to all. 
TORCH LIGHT FINISH


Tuesday, 27 August 2019

Don't forget to put all 5 seat belts on

Today is being one of those days were whatever goes wrong I am somehow managing to keep smiling, feel like I am back a bit tonight. I must confess I have over synned and had two and half slices of the most amazing chocolate cake. I really really enjoyed it too. I will just go back to 5 to 15 tomorrow.

I woke up determined to try and have a good day, I decided to go see my mum n dad this morning, we had a fabulous Slimming World breakfast on the BBQ.

I helped my mum peg washing out forgetting her line spun around it's one of those whirl ones. She just ducked and laughed apparently my dad does that to her all the time. It was good to be able to carry the wash basket on my knee and actually help her. It's hard having to have your 81 year old parents still do the caring for me. But today I just feel grateful that I still have them. I didn't even feel guilty as while I was having fun in the sun Clive was posting another 500 leaflets.

When I went out in the car Clive and I were too busy yapping about a knitting pattern that we forgot to put the front belts on the power chair, I have done my first wheelie whilst in the back of the car. Then on the way back I put the wrong seat belt on, I did wonder why it was so tight and far to low. Then trust us tonight on our way home from friends we forgot to put the back belts on. So today we have managed to get all 5 safety belts wrong that's commitment to try and tip the chair up.

Clive keeps having to go outside as our electric keeps tripping.

But you know what all is good because they are coming to mend the toilet raiser on Thursday. All because of my tweet suddenly I have the direct numbers to people and it's been referred to someone at the Health Authority Complaints. I am so pleased in a selfish way it's being sorted.

Even the three mishaps I have had today haven't even made me cry, I will so appreciate being able to use the toilet again on my own.

Love feeling I can do this again.




Monday, 26 August 2019

Is it just me?

Not sure how to post today. When I started this  blog I thought it would be easy to write how I really felt. I was fed up with feeling alone when I knew I wasn't the only person feeling this way. I also thought in my naivety that I might be able to help other people who feel like me.
It's not that easy as I already feel I should put on a mask for my blog not say when I am feeling down etc, but then I am conforming to everything I don't Believe in, I also really don't want to upset the other half because he does an amazing job caring for me.

Today started well then just one little comment set me off. Do any others in my situation get really frustrated if their other half wants to go out and tries to arrange a baby sitter. Makes me so cross, don't get me wrong I know it's because they care and probably want to reduce their feeling of guilt because they want to go out. BUT I know who my friends are what they are doing and I am quite capable of arranging something if I want to.

Also today I have been thinking does anybody else feel they have to work extra hard to compensate for our disabilities I feel so guilty because I can't actually deliver leaflets around houses as part of my SlimmingWorld BBuisness. It's daft but that is how I feel.

I am so fortunate to have the support I do but it kinda makes you feel a burden because I know I can never live independently at 49 I have to a back up plan just in case I fall. I am so stuck even if I haven't hurt myself I still can't get up.
Have had 2 more near falls which is really scary because it means I have obviously lost some more muscle. Very careless of me I know.
I am doing all the right things meditating, relaxing getting my nice clothes on doing my hair no point doing makeup as silly eyes keep leaking. I have even tried to read a book today, just reading this it almost feels like a real grief like sadness, probably all because of the fall the other night.
The one thing I have learnt from last year is pushing these feelings away pretending you are OK when you are clearly not is not the answer.

On a positive I haven't eaten too much cake or chocolate yet and I have a lovely kitchen.
So my plan of action is to sit here in my beautiful garden and listen to the birds and tomorrow you know what I am going to come  back out fighting I am.

Sunday, 25 August 2019

May be I am never going to be totally independent.

So very proud of little old me yesterday, was an awesome sunny day perfect for popping a few Slimming World Leaflets through doors. I have come to understand maybe I just have to accompany Clive so I can chat to people, look pretty and spread the Slimming World Love.

So many of the houses are like this around my Wednesday Group. My power chair has a range of 16 miles on the flat we had to stop after 400 leaflets my battery was on red, it was fully charged when we started but the hills drained it really quick.
I kinda understand now why Clive doesn't get many offers of help to do it.

I loved being able to pop to the shop for a diet Pepsi all by myself. Was smugly thinking I got this  no problem. The flipping diet Pepsi just happened to be on the top shelf of the fridge, no problem I will use my seat raiser, goodness it's slow but up I went right to the top and still couldn't reach it. Back down I went and had to ask but that's no problem. Off I zoom to the crisps my goodness when did they start making so many, a whole aisle for crisps. I haven't been down the crisp aisle and actually looked at them in years, it felt like when you are pregnant and you think I best get nappies and that's just another world too.

I then had a little wonder around and nipped in for a cuppa with my parents, my parents have lived in the same house since I was two years old. One thing I noticed was how hilly everywhere is. There is no wonder why I always struggled to walk when I was younger I was always at the back I could never keep up with my cousins. I always thought it  was because I was overweight as I child and obviously unfit I thought everyone's muscle stung when the walked up hill, it never occurred to me it wasn't normal for your legs to really hurt at night and your feet to feel like you have concrete in your boots. I should of been born in Norfolk.

The power of social media, I thought I had been extremely lucky that Medequip had been Friday, I had temporarily forgotten I shared my blog on Twitter and just happened to tag Medequip. The day I was really feeling sorry for myself. I did receive a reply too my complaint is being looked into. Now I feel a little bad as I didn't actually complain, strange though that they just happened to pop round though.

This is why I am so proud of me, on my way to bed last night, its not a long journey three steps from my chair to the door frame. Just 1 step with no support yep plop down I went. Goodness I go with such a thump thankfully head went backwards so the bump is in my hair, no blood no black eyes or broken teeth. I did kinda do the mini splits ouch is all I can say, at least Clive is strong and I am small as he has to lift me 100% I can't help at all. The bones don't half creak mine as well as Clives. Today I do feel like I got a bit of whiplash and back and shoulders like they have been well shuck up.

Only a few tears though no self pity we have changed our plans today. No leaflets been looked after and rested. Spent the morning playing with my camera. It is so relaxing and was great with my mobile tripod attached to the chair.
These are my two favourites from today.

I have done a little bit of kitchen tidying. Me being me have stuck labels on the lids of all my spices in my draw very OCD but very me, just opened the draw to take a picture because was so proud and all the labels have fallen off. Well I never is what I said, not. 
I shall leave the waffling here now so I can get ready to see my friends this lovely sunny Sunday. 

Friday, 23 August 2019

2 Syn Blackforest Gateaux Dessert

 Today I am pleased to report has been a fabulous day, the sun is shining this really helps as my muscle pain is so much less.
The man from Mediequip actually came this morning to take photographs of my toilet raiser. (no phone call first)
I have made the decision to just leave it now and see what happens in the next couple of weeks. I do find it really difficult if I am not in control of things but life doesn't evolve around me and maybe I need to just wait patiently.

I did go to Kimberley to put up Slimming World posters in the shop windows. I am chuffed to say it all went well. It is an old town and the access to most of the shops was great. I managed to feel I was doing my bit, I could of done more if I hadn't decided to buy a flower in the first shop we went into. In my defence it is a lovely flower and I am hoping to be able to take some great pictures of it tomorrow.

I was pleased I couldn't get up the step into the cake shop, oh my goodness double layer chocolate brownies, cakes that just looked amazing, I would definitely have had to have a chat with myself about how much I want 3 pounds off. To be fair and honest brownie would have won. I am chuffed I have my amazing flower.

Another amazing thing today I wasn't at all embarrassed to be out and about in my power chair it already just feels part of me now. I can do so much more independently loving it.

The kitchen is finished just needs more cleaning and for me to decide where the best place to keep things is going to be. It's difficult trying to think which things are essential for me to be able to access easily to enable me to cook by myself.

I have had a little play in my little area and made the Blackforest pudding using quark chocolate options, fresh cherries and the new Slimming World Hi Fi Bar all for 2syns. I haven't tried cooking in my chair as I know for it to be successful I need to feel calm and relaxed which I don't today.

Seabass has a friend coming over this evening so will be a crazy house, we are having a BBQ, all food optimising.

Tomorrow I am hoping is going to be another fun packed day, I want to cook, go leafleting do some photography I just need more hours in my day.

Thursday, 22 August 2019

If all else fails think Christmas

I promise today I have stopped feeling sorry for myself, it really doesn't help me cope at all. I was thinking last night why I do things sometimes, those of you who food optimise will probably be able to relate to this. Until a week ago I was so proud of my weight loss journey and my ability to remain in Target Range, I hadn't eaten out of control since last time(sorry couldn't resist) since beginning of February that's over six months that's amazing.

Don't get me wrong I have over synned but that's OK I have counted every syn and enjoyed each and every one of them. I have felt incredibly in control.

This last six days a lot of my bad habits came back, I am not going to list all my wrong doings it won't help anyone but I have sat eating things just because it is there. I started with granola don't really like, I haven't enjoyed it, I have sat eating it telling myself I am useless, rubbish etc. feeling totally out of control.
Each day vowing to be 'good' today, missing breakfast far too busy and to be honest feeling a bit yuck from over indulging the day before. Then getting too hungry not making the best choices and yep, spoilt it today  start again tomorrow. We have all been in this cycle.
I am so fortunate to have Slimming World in my life.

So with the help of Margaret if you don't food optimising Margaret is the founder of SLIMMING WORLD. She talks about thinking how to protect ourselves and to address each slip as a learning opportunity.
No food is a 'good' or 'bad' food it is all just food. I know what to do, I need to eat breakfast never have time so I need to make my breakfast early in the day before I get too tired so that it is done ready. Make sure I don't go to long without food get too hungry as I will not eat healthy food, I need to make sure I know what I am going to have for lunch and tea and also is it sensible choice, by that I mean will I have the energy to make it. There is no point me making plans for something that takes a lot of preparation on a Thursday, I am just so tired will not happen.
This process I just need to do it, but I started this by saying last night I was thinking and a massive light bulb went hello. I lay in bed thinking how much calmer I felt already, I had only had one full day food optimising.  So why do I go off the rails, I remember my psychologist working through things with me, I am a problem solver I love to work things out how can I do x y and z. Finding my own solution I need to feel in control of me.

So I think because I am feeling totally out of control over my toilet situation I almost put 3 pounds on on purpose, so I have something to control.
Something I can achieve I know it sounds crazy but I truly think that's what I do. I know exactly what to do to lose weight.
The great thing is I am now thinking how God damn interesting what  a complex person I am, which is so much nicer to myself than just being cross angry and ashamed of myself.

I hope this might help someone else, of coarse this was totally out of my awareness I thought it was because I was just stupid which clearly I am not.

So I am pleased to say as we do I have my mojo back where she belongs food optimising being kind to me.

The picture is a fabulous present I got today from an amazing lady who just knows what makes me tick. Christmas. 18 weeks that's all.

Disabled obviously can't work
Came home from Slimming World  this morning to find this card.
 I have underlined the most amusing part keeping people independent for longer.

When I rang yesterday I actually cried because I felt so desperate, the lady to be fair did listen, did keep me updated on what was happening. The situation was left yesterday with a lady from clos o mat would ring me to arrange an engineer to visit. Hallelujah for tears.

When I came home to this my first response was to eat 4 jellybeans then I thought nope not going down that route. After I eat 4 but not the whole jar.

Clive rang medequip,  today the women was just plain rude, she knew nothing about a visit, bless him Clive is good he just calmly suggest she find out as we clearly have a card through the door. She came back with.... an engineer came round and you wasn't in. No, really, I thought funny that we kinda knew that, maybe if they had phoned first I could of made sure someone was in, they are amazed I work. So disabled people obviously don't need to poop or can possibly go out.

Going to leave the waffling today, with 2 days food optimising and tomorrow I am so excited to be going out with other Slimming World Consultants spreading the love.
Still don't know if they are coming to look at my toilet or not.

Tuesday, 20 August 2019

It's OK to be not OK unless it's me

I would love to report that I have been on some great adventures but nope I haven't. Its been a really challenging couple of days not sure if it will be interesting to read or not.

I haven't had the emotional strength to continue my fight over the toilet, I have heard nothing since Friday I am now incredibly cross with myself for not standing up for myself,I know nothing will get sorted if I don't keep fighting no one will do it for me, why I didn't feel like that couple of hours ago when I could of phoned medi quip again.
It's just so frustrating and I find it so embarrassing and undignified to have to beg someone for the ability to go to the toilet.

I studied hard very hard as a young adult I made choices not to do things as I so wanted to be a doctor, it didn't come easy for me I find English very difficult let alone Latin but I did it. I loved it the hours were long it was heart breaking at times but I did a good job, I can say I made some really hard times for families a little easier. I fought battles for my patients so things like this didn't happen.

It really wasn't on my bucket list to have to spend hours being told this is the system and this is how it works. Don't people understand no one should not have the facilities to go to the toilet. It's really hard because I also know losing my temper getting cross with these people will not help at all.
I actually want to ring them and say right young lady you are a receptionist your job is to communicate with the public, clients patients, service user whatever you want to call us. You are not smarter than me more importantly you aren't superior you are a cog in a wheel stop being pig headed and help me. Well that's the polite version.

I have felt really tearful and emotional since Sunday. I have felt like I just want to go to a desert island sit on the sand and watch the sea. I have started questioning my ability to do my role as a Slimming World Consultant, why would my partner want to be with me. This are all signs I know when my little brain says its had enough of all this crap. I also start eating rubbish because that helps me be really annoyed at myself too.

Yesterday I tried hard to pull myself off the pity Pott even went out to buy some nice healthy food. Went for a lovely coffee too couldn't bring myself to buy any ready done food all to high in syns but did make good choices. Felt much better but on coming home the caffeine in the coffee caused a massive bladder spasm and I couldn't get out of my chair. The inevitable happened one wet chair. Now this is a massive big deal to me I can't get the feeling onto the blog yet I wasn't going to write about this but this was one of the reasons I started this in the first place. It is OK not to be OK as the modern world says apart from when it's me.
So lots of washing to do with no washing machine good job got a mum. Also I have a couple of amazing friends who can help me laugh about these things and it's not the end of the world etc. I do know though it would not have happened if I hadn't been restricting fluids because I have no toilet facilities but that just makes me cross again.

Today I spent the morning cleaning I love cleaning can only do a stripe about 1m wide as I can't reach low or high. I have done my best. I have a clean bedroom and lounge not tidy but it's better well the stripe bit is clean the top shelves are dirty. This took about 3 hours and about 3 hours sleep afterwards this afternoon but it feels better.

My day off hasn't gone to plan haven't been out to play with my camera as planned but hopefully I feel refreshed enough to continue the fight for the toilet. The worrying thing is Clive is having major surgery in 6 weeks and can't lift me at all for 12 weeks. They will probably suggest I go in a nursing home again!!!!!

The kitchen work has stopped no idea when that will continue. I am off now to make a list for action toilet tomorrow.

Sunday, 18 August 2019

Slimming World Leaflets A Whole New Challenge

This morning was just plain fabulous I loved getting up putting on my bright orange T Shirt to go and be part of the leaflet delivering community. All across the country today will be Slimming World Consultants and their families popping leaflets through doors. Each one of us have had there lives changed in so many ways by Slimming World and for most of us it all started with one of these landing on our doormat. So yes we do all care and we regularly pound the streets in all weather to do as we say "Spread the Slimming World Love". 


This was my first time being able to go, my power chair again enables me to do things I previously couldn't do. Seabass and myself where off, Clive my other half had warned me that I still might struggle but me being me was having none of it. Alright then smarty pants I was going to rapidly slow the process down a lot.

First small issue it's Sunday most people are home that's why we are encouraged to leaflet on a Sunday, so where do most people park their car on their drive. Well that's the issue there isn't enough room to get me past the car to the door.
Second small problem most have a little step up to the door some have big steps to the door, kind of a little problem with wheels. I have a whole post about steps.

There was an occasional door with no car no steps and the flipping letter boxes where on the floor. These should be banned poor posties. We decided I would carry the leaflets and look supper pretty while Clive delivered then.

I did enjoy my morning out in the fresh air talking to people, Seabass had a great time and has been sleeping since.

The other thing I noticed I have noticed this before but this morning was very apparent, how many cars park on the pavement so you can't get passed. Which means a person with a walking frame or just a walking stick can't or a young parent with a buggy. This links with the drop kerbs most of them park on the dropped kerb so I can't get down onto the road to get past their car.

Why don't they ever match drop kerbs up either, by this I mean so they are directly opposite each other, there is probably a reason but I don't know why.

I really enjoyed being able to participate I won't go every time, we have another 5600 to deliver and I am incredibly tired but I did it.

The rest of my day has been playing with my camera and having the usual sulks because other people did better pictures than me. This has nothing to do with the power chair just me being me.
I was pleased with my efforts until I saw the others, don't compare yourself to others Amanda



Saturday, 17 August 2019

Chairs and Gravel don't mix well.

Think I needed one of these today, I am determined to keep this positive. No news on the toilet situation nothing I can do until Monday as you obviously don't need to pooh or we at the weekend if you aren't fully able.

I had a great evening last night at photography club can't wait to process my pictures got some cracking ones. Woke up with a massive abscess on my gum but determined to go out and have a great day.

I have really surprised myself, we went to a new water sports centre locally which is lovely. However most of the ground is covered in thick gravel. The first time my wheels got stuck was ok soon back on the move after a little push.

Then I just happened to get properly stuck in deep gravel um, handy for me directly opposite the Reserve Royal Navy stand, 4 very athlete looking men standing watching me ,guess what, they did the real gentlemen thing literally turned their back on me. Says a lot about our so called Royal Navy ok Reserves but come on .

This made me feel better about humans a group of young men/ boys only in their early twenties came straight over. Literally picked up the car out of the gravel. Its amazing all the people that stare manage to look the other way. Of coarse I was pretty flustered as obviously I just wanted the world to swallow me up, what am I thinking wanting to go out to such places goodness haven't I realised yet I should stay safely indoors.

To be very fair to the staff once they noticed they couldn't of been more helpful. We drove the car up to the decking and went straight up the ramp so no more gravel.

Later on during the day it was amazing I decided the gravel incident was not going to spoil our day and to carry on. We did, it was fabulous being able to watch everyone wake boarding, its kinda water skiing on a snow board thing. I am fascinated watching how people can move their bodies mines never done that. I really do think the human body is just yep amazing.

When it came to leave my new confidence was fab, excuse me could you move your board, blank look, excuse me I would like to get through please, totally ignored yes they could hear me looked straight at me, very careful not to gain eye contact and again turned away. My other half came to see why I was taking so long, guess what they heard him straight away and moved still no eye contact with me.

 I think we need some serious education about people in wheelchairs are actually the same species as all humans.

Even though I am having just a little moan I am so pleased I haven't let it discourage or upset me. I do have a right to exist and go out and enjoy myself and I actually have a voice. (and even go to the toilet at a weekend).
 I have done my bit too and e mailed a lovely e mail with a link for matting that you can put on gravel for us wheelies to go on.

Tomorrow for the first time I am actually going delivering Slimming World Leaflets something I haven't been able to take part in before. A lot of Consultants hate this part of our role but I have always longed to be able to take part, I have always felt really guilty that I am unable to help and that I am not fully participating. So will be interesting to see what tomorrow brings.

Friday, 16 August 2019

It's a chocolate cake kinda day.

I could so just eat that right now if my poor little mouth didn't feel so sore. OK so root canal work at the end at the end of 2 extremely busy days was not the best idea I have ever had. Put it this way it feels like someone has literally hit me round the head with a baseball bat. On the positive side it doesn't look like I have had anything done at all, so vain old me is happy.

This morning has been one of those mornings where people drive you mad. I have tried really hard not to let self pity get in the way this week it doesn't do me any good and it's frankly very unattractive. The saga of my toilet continues and this is where I get so cross.

We have all this concern for political corrections can't say this do that etc. Human rights of criminals don't get me wrong I agree with human rights for all. The elderly and disabled do get a raw deal I think.

My situation could be worse but I do think in 2019 I should be able to use the toilet in my own home independently for as long as possible. When the time comes that I am unable to do so I will just have to accept it. However I can use the toilet with the aid of my Aerolet Toilet Raiser. It is a simple piece of equipment that basically lifts a toilet seat up to a height I can lower onto then lowers me onto the toilet. I am such a clever girl I can then we we or pooh pooh, the seat then raises up so I can kinda slip of the edge job down all by myself. It broke 8 days ago.

This simple piece of equipment costs over £4000 pounds and I really do appreciate that someone passed away and donated it to Medi Quip and it was just by chance I was allowed to have it.

This is where it all gets stupid Medi Quip can't mend it, it's a sealed unit the manufacturer need to come out which Medi Quip have requested, I rang today to check when this might be, as you can imagine it isn't nice to only be able to go to the toilet when your partner is home. It's not nice to be lifted on and off either. Or to have a house full of work men doing the kitchen and have to shout I am finished like a toddler on a potty. I have tried to be so adult and patient about this but I shouldn't have to feel like this. It's kinda pants excuse the pun to feel a nuisance because you need the toilet, to feel you are over reacting that somehow it's OK for us because I have MD so suddenly it's acceptable. That my other half should feel guilty for going out for a couple of hours incase I need the toilet. So I decided to chase things up however 3 hours of phone calls and e mails to be told Medi Quip need to contact them again they can't deal with me and for Medi Quip to tell me they have done their bit and they know what they are doing, the way it was said made me feel like so stop making a fuss.
In the mean time while these two organisations play a game of not wanting to back down, I am left with another weekend or god knows how long that I can't go to do my Buisness without the other half. I even rang to ask how much it would cost if we paid for them to come and have a look £500 plus vat to just come out for goodness sake I just googled and you can have an Aston Martin serviced for that.

This left me feeling so flustrated and hopeless this morning and out of control. What really concerns me is I am a professional women I am used to dealing with these agencies I have the skills to know how to flatter a medical receptionist to get them to help you. (sorry to the medical secretary who I know reads my blog), how would an elderly person feel or a person with learning difficulties, anxiety or interaction problems feel. I really do have an understanding now why sometimes people can become aggressive and very upset dealing with these things.

So I have decided to be kind to me and just been back to bed for 2hours feel a little better I am hoping that I am able to go to camera club as I have been looking forward to it all week. I was bought up if you can't go to school you can't do the nice things and this is one of the things I am having to flip on the head. If I don't rest I won't be able to do the nice stuff.
Last straw just was going to a have a jacket potato in microwave to give body what it needs not cake and the fuse has just blown.
Of to meditate now.