Tuesday, 21 January 2020

National Acceptance Day

Today has been a typical Amanda day, I woke up in a very positive mood, thinking that it being National Acceptance Day I should start by accepting myself for who I am and being happy and confident about my own thoughts.

I sat in bed having a cup of tea thinking about what a profound blog I could write about how society doesn’t really accept disabilities etc posting a picture on Facebook thinking how I am going to change the world. National Acceptance Day is 20th January and yep today is the flipping 21st Jan that’s me late to the party I missed the day. This has nothing at all to do with Muscular Dystrophy it is just me being me. Today I don’t really care that’s just me.

I am starting to feel so much better I have realised that I worry far too much about what other people might think about me instead of just getting on with my life doing what is best for me. I have been struggling with such intense pain for a few months now and have been doing a lot of research and reading about my options.  One of my options is medicinal cannabis but I am totally against this, I appreciate it works for some people but it is defiantly not an option for me. I can not tolerate morphine and I am allergic to codeine, medication wise this leaves anti inflammatory medication which is not a good option either I need to look after my kidney function.

There is a lot of evidence that a plant based diet is beneficial for muscle inflammation as well  as the other health benefits, I have been considering trying this for some time. Lots of things have been stopping me the impact it might have on my family, not wanting to be awkward, thinking I couldn’t possibly live without eggs people might think I am going really strange. There is so much stereotypes about plant based diets.

However like most things in Amanda's world it has to get really uncomfortable before I consider changing, so I decided to give it a go, now is so the right time to do this as its Veganuary Vegan January , most of  the supermarkets have a plant based section at the moment. It is very early days in my little experiment as I am only day 8, however I definitely feel different. My pain is definitely less this my well be a placebo effect because I am so desperate for this to work, my muscles are so much more relaxed the tension and spasm is far less. The other surprising thing is my headaches have gone, I have had headaches on a daily basis for many years these went after 24 hours.

Me being me is really enjoying reading and researching all about the different ingredients I am using I eat a lot of vegetarian meals its only really the diary free and eggs that I eat a lot of.
I am extremely fortunate as I have a vegetarian/(vegan at times) daughter who is also interested in nutrition and cooking so she has pointed me in the right direction.

So far the most surprising thing is the milk I have never really liked milk but oat milk to me is just delicious and alpro soya yoghurt I love. I cooked tofu for the first time today and yes I thought it was really tasty, I appreciate I have been very bored with my food recently so experimenting with different food is always good. I have decided to go 100% plant biased for 6 weeks I am not vegan as I will still wear my leather boots etc I am doing this to the pain experiment. I really don’t understand why I feel the need to justify to others why I am doing this. Don’t get me wrong other people haven’t said a thing it is my own prejudices about people that I am dealing with.

Today I have been out with Seabass and friends in the fresh air and loved it, I want to go back to being grateful for what I have got a lovely family and some great friends and live in a very comfortable country. I so need to try and get out more maybe I should try Red February as I am far to late for Red January.

Sunday, 12 January 2020

Will I Ever Learn

Will I ever learn probably not, I always thought I was a reasonably intelligent person, however I have been feeling rubbish the last couple of weeks, I haven’t been blogging much at all as is obvious from the absence of posts.

I kinda know what has happened and I have a few changes I need to make in my life, I do miss writing my blog, today I have read some of my posts and my goodness. I realise my command of the English language and spelling is rather pants. You would think I had never read any of my posts before I publish them there are so many typing mistakes and spelling errors , feel quite embarrassed but I suppose that’s just me .

The thing that struck me so much is how I keep repeating the same pattern, so why haven’t I put changes into place to help myself. I really don’t know is the answer.

At the moment the only thing I am doing is my role of a Slimming World Consultant which I do love,  it hasn’t helped because I was already exhausted when I started the busiest time of the year. It all started with those blasted leaflets, I never dreamed that a little piece of paper can cause a person so much anguish. However they do, the reason they do is because I know first hand how much a little leaflet can change a persons life. So they are an important part of my role.

This time I have done things differently and had the most amazing help from some amazing people and if any of you read this blog I can not thank you all enough. The leaflet distribution worked we got all 6250 leaflets through letter boxes on time I actually enjoyed the days we where out leafleting.

I had a gentlemen join our group because of a little leaflet dropping on his mat, he is already feeling better about things and is looking forward to making changes in his shopping cooking and eating so he can improve his physical health, this is why I care about them so many people are desperate for help and it truly brakes my heart when people get pulled into quick fix fads that are not only expensive but they don’t work, they are then left feeling worse then when they started.
There are other parts of my role that I do which for me are physically exhausting, I am not feeling sorry for myself or moaning and I will not list them all, but I have to try and accept my body is different, I can’t do as much as I could 6 months ago, my arms are so much weaker and so is my right leg, my body gets a hard time from me because I always push the limits until it hurts so much that I have to stop ,this always means I sleep or I cry. I have been doing a lot of both.

I have been doing other things when I think about it, because I am so sore and tired the nice things I have been doing just don’t seem as fun. 

Last week we went to the pantomime which was just plain fabulous we arrived early as we do so decided to go for a coffee. My goodness that wasn’t easy all around the Theatre in Nottingham are lovely coffee shops and some not so lovely all with steps, we did manage to find a costa and it really didn’t bother me the access issues, this was most likely due to the fact a very nice car driver didn’t run me over when I forgot to look before I crossed the road. It’s amazing what a smile can do.

Not really sure where this blog is going or if I will publish it to be honest as it feels very poor old me and that’s not what I feel. I am so grateful that I have been born with an amazing ability to keep going  and keep picking myself up. I just wish I could learn to not let myself get so low before I try and pick myself up.

I haven’t mentioned my food optimising journey well I am back on my journey towards TARGET I did amazing on the run up to Christmas totally in control, Christmas Day and Boxing Day just as I had planned then oops self destruct and a large gain. So much I felt such a fraud when my story was published on our Team page as on that  day I was eating very high synced food. I really don’t know why I do it , I don’t enjoy it but even writing this I can feel a change from not even thinking of chocolate and cake to really wanting to have some. We all know we can when food optimising however I am starting to think I might have to permanently stay of the cake.

I am enjoying trying new foods at the moment and I am introducing more plant based meals for a few reasons which is a blog post in itself.

I think this is enough rambling for one day, just as a disclosure these are just my mad thoughts and before anyone puts 2 and 2 together and makes 7 I am still the same happy bunny enjoying my role as a Slimming World Consultant just have to manage my time so I am not so tired and let my little body rest. I am looking forward to spring getting my camera out and my crochet, also looking forward to blogging my adventures not just about my crazy brain.

Monday, 30 December 2019

Oops I done it again .......

 I really can’t believe that after my last blog in which I said I was going to spend time on me and actually make time to do this I haven’t.

I have actually gone back to my factory reset button which is work, work and if there is a little minute work some more. I am not sure where it comes from but I have always been the same.

The sad thing is I have worked so hard this December I am finding it very hard to switch off and relax.

I haven’t picked up my camera since my birthday which is two months ago, I find this very sad, I haven’t read a novel either. I am sat here tonight not actually knowing what to do, I have had a lovely day out in the community putting up posters for Slimming World and the past few days I have been out and about delivering leaflets.
This is part of my role that I find most difficult, doesn’t matter how much I try I simply can not post a leaflet through a letter box, I have accepted this I think but it still upsets me that I can’t do it. I am not sure why a silly thing like a leaflet gets to me but it does every campaign.

This time I have approached things differently and it has worked, I asked my members in group to help me and both my groups have amazed me. These aren’t all the people that have helped but I have permission to use this photo on social media. I worked really hard with google maps and a spread sheet, we attacked both my areas like a military operation everyone had there streets to do and we have delivered 6250 leaflets in the last couple of days. Apart from one small hick up its all gone well so well I have been left with all this adrenaline that I really don’t know what to do with.

In my typical Amanda style I have eaten cake and chocolate, that’s ok I am starting to realise I do this when I am feeling unsettled I don’t know how to deal with the feeling that we have done an amazing job and ok I haven’t actually posted a leaflet but they have all been done, now I need to look after myself and be ready to welcome people in January.

2020 is so going to be a fabulous year something is niggling at me I feel a challenge coming along but I really am not sure what it is, I do know that I want to use my skills to help people be happy and I would love to just be me.  When I do relax and get on with life instead of worrying about things I have so much fun, I loved my day at Elf the musical I so wish I could sing and dance ,I feel a little sad that the Elf outfit is going away for another year or is it.

I am going to try and get back into the habit of blogging everyday, and looking after my own mental health which has kinda gone out of the picture, I don’t do New Year Resolutions but I might this year.

Sunday, 8 December 2019

Its Christmas For Us Too

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

Friday, 6 December 2019

Its just such a busy time for Elves

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

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

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

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

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

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

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

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

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

Saturday, 9 November 2019

Wish everyday could be holiday

Even our own cotton buds

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

Paddington Bear Springs to mind

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

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

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

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