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. 

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.

Thursday, 15 August 2019

Why oh why do we do things.

The past 2 days have been a mixture of very high feelings and tiredness and pain.
I wasn't going to blogg today because I am as predicted really shattered. Root canal surgery is not pleasant and that's all that can be said. Apart from I have been a very brave sausage and my nose now feels like it has been bopped by a baseball bat.

My Slimming World Groups this week have been awesome we have been celebrating our Women of The Year 2019, I have sat and listened to some amazing stories of how ladies have really turned their lives around. With the help of group they are all living a healthier, happier more active life and a lot Slimmer 17stone lighter between the 3 of them.

When I read this poem before the dentist I didn't read it properly and thought it was absolutely awful. For some reason I went back to re read it and read it from bottom to the top. One very clever poem and just shows how we can take words in differently when we are tired or not giving them our full attention.

This then gets me to the reason I am blogging tonight, why do we do things we do. I know from a Slimming World Food Optimising view my danger areas are tired, not eating properly and discomfort. Now I type it I kinda get what happened. Obviously sore mouth, very very tired and hadn't eaten till after the dentist. So was really hungry, couldn't eat before because of nausea.
So had a lovely food optimising tea then just sat and nibbled away two dishes of granola, I don't even really like granola I was sat eating it thinking will it help me no, will it make my mouth better no, will it make me less tired no, will I regret it later yes. Oh well but I will eat it anyway. Why do we do it. I just can't answer that.
I just need to make sure I keep myself busy hence the blog post.
It is really really hard when your body is saying enough women you do remember I have MD I can't keep doing all this. I really have put it through the mill in the last 48hrs but tomorrow is a new day. Friday and I am hoping for a bit of a rest over the weekend. I need my energy for when the kitchen is complete.

Tuesday, 13 August 2019

 Think I had better set a timer tonight so I don't go on and on. Today has been a really challenging day for me. Started really positively, been thinking I really want to master being able to use my camera easily in the chair. I love taking pictures but because my arms haven't enough muscle left I can not hold the camera. I have a really light weight camera and light weight lenses. I can't actually get my arms up to my face without anything in my hands so can't expect them to hold a camera.

The tripod is great when doing set photography like food or a flower in a vase. I want to be able to walk around taking pictures, OK I will settle for wheeling around.
We are trying out this attachment made by the other half, it is actually brilliant.

I can move the camera focus and the arm holds everything steady while I take the picture. Off I trot to Elevaston Castle, all excited to be going out in the field with my camera to take pictures of bees and squirrels. For an intelligent person I can be very stupid at times. It's the school holidays it was full of families enjoying themselves. Please don't get me wrong I love children love watching them play the squirrels had sense they were all hiding.

Some people are just plan ignorant and rude, most of the children were great but my goodness some of the mothers, I wanted to say have you not seen a person in a chair with a camera before. Some actually stood just plain staring and I mean staring, don't tell me it was in an inquisitive way or just watching me it was stop walking stand and stare way.

I tried my best to keep out of people's way, sat patiently trying to focus on an arch way waited for the children to finish playing. There mothers saw me and hurried over stood directly in front of me and the arch. I waited not patiently on the inside but on the outside, I just felt pants wanted to scream I deserve to be hear too I am aloud to enjoy myself I didn't obviously.
 Sat moaning here moaning it has just occurred to me that I could of said excuse me please do you mind stepping to one side, I am trying to take a picture of the arch with the duck in the middle.
 Maybe they thought I was going to take a picture of their precious brats oops sorry children.

I will stop moaning soon just been discussing this with a group of people as its been annoying me all day. Why shouldn't I try to learn to use my camera I like it. It normally helps me relax. Anyway that backfired as they were just a tiny bit patronising and going on about maybe they hadn't seen a chair like mine before and did I know there are lots of different chairs. OK my time is up for going on, I am just going finish with some people are just rude and need a slap sorry.

I came home because it was just getting to me all those feelings of insecurity and maybe I shouldn't try to do things came back and when I nearly ordered a Brownie at the cafe my alarm bells rang.

When we got home I thought no they are not going to beat me, hell no. So I went around our village on my own in the chair with said camera. Was great i felt safe and secure, a big lavender Bush with loads of bees. Um it's kinda difficult trying to move chair not reverse off the kerb and focus think I need to come back next time as an octopus or not have MD.
I tried for about 45 minutes then cheated and took the picture above with my phone, I do smell really nice of lavender though.

I came home feeling with time and patience I might be able to do this. I also saw my new work station in the kitchen. It's going to be fabulous the chair fits under the work top I am going to be able to do so much. It really is exciting and the colour is really nice today.
Funny thing tonight I have been trying to help a fellow MD warrior realise that using her chair isn't giving in. The Internet is great but can be very dangerous when people are giving out lots of advise when really would be best to keep zipped.
There is nothing wrong with us using a chair so we can use the little bit of energy and muscle we have to do the fun stuff. We aren't giving in to our condition in fact it's quite the opposite using the equipment is actually enabling us to live.
I am going to go now, I have two very challenging days ahead for some rather strange reason I thought I was super woman and it was normal to spend tomorrow lunch time at the hospital having a minor procedure done then go and run my amazing Slimming World Groups. Get up the following day and repeat Slimming World and finish with root canal surgery on my front tooth. Um Amanda you are not quite right in the head.

I am pleased to report I have completed another day without a kitchen fully food optimising and no tears.

Monday, 12 August 2019

Oh the dust and clutter.

I am trying really hard today to stay my chirpy little self. I am tired think that's the problem and it's so very very dusty and messy. I know I sound like a spoilt little brat, my kitchen is coming along nicely. Not sure I really like the colour but it will definitely be better than the old one and hopefully be able to get around a little easier in the chair. I am loving the chair now slowly it is bothering me less and less.

I have had a fall today first during the kitchen stuff wasn't a good proper fall. Went head first towards all the tripods but managed to save self by wedging my head against wall. Had to stay like that until other half could pick me up. No blood bruises or broken tripods just sore shoulder.

 I forgot about no kitchen again when a bought a melon earlier but the sun came out so I could go and prepare it outside, two tomatoes on my plant have ripened I have actually managed to grow something. First time I have grown tomatoes, I did manage to grow a beautiful daughter once lol.

Just got my PJs on only 6.30 because feeling a bit low and sorry for self but... Yipee some lovely friends just called its a nice evening so gotta go and get dressed we off to Trent Lock. Will have to finish this later hopefully in a better mood.

Just had a lovely time Fresh air has done me good felt a bit odd when we arrived as didn't realise the rest of the camera club was going to be there. I did feel self conscious in the chair but something strange and very surprising is happening, I didn't feel a nuisance or a burden for being in it. We just decided I would walk well wheel with them as far as I could then go back and wait for them. I was totally cool with that however other half and a couple of ladies who just happen to be frightened of cows stayed with me.

No problems until we went for a drink, my coffee was too heavy for me to pick up, instead of asking for a different cup or straw like I always do. I suddenly couldn't was just like the old me thought everyone was watching and some how wasn't such a fun person to be out with. How flipping nutty am I, now am home realise its ridiculous to judge myself on the strength of my arms. I can't help how I feel at the time though.

I then got stuck on the grass, I kinda getting used to this wheel spinning life. Finished the evening looking at old photos on my really old I phone. Now am going to bed to think where we can go tomorrow. Need to get out this dust.

Sunday, 11 August 2019

Where there's a will there's a way!!!

We Did It
Well what an amazing day I have had let lose all on my own, well not quite on my own been with lots of other people too. The day kinda started ok woke up so excited for the Golden Bus apparantly I am not the only person to be excited so I am not entirely unique. I did get a little moody as I am kinda finding it difficult living in all the mess and disruption of no kitchen. Its not so much no kitchen thats hard its the fact no room anywhere at all. If anyone else tells me to try and make it fun like an adventure camping, I am going to bop them on the nose. Its hard enough to try to balance or get a chair around a tiny bungalow but you try and walk when you kinda have to side step around things. It is like running a marathon to get the milk out the fridge in the hall. Just a thought I don't like camping anyway. I haven't cried yet so still think I am doing ok.

We kinda didn't know where we were going but in my defence I can't see out of the car so techniqely not my fault we went up a bus lane. I was dropped off with no idea where I was or where this Trinity Square was. I was so determined not to get all silly and flustared out came google maps and off I went. In all fairness I think the other half was more flustered leaving me than I was, so funny though I only turned a corner and I could see the amazing Golden Bus. I got there.

I am not sure where this confidence is coming from and how long it will last but I am really enjoying it. I have spent the day chatting to all sorts of people about Slimming World and Food Optimising, being in my power chair hasn't bothered me one bit today at all. It was great because I have also spoke to some really lovely Slimming World members who has managed to achieve their Target weights whilst being in wheelchairs or with mobility issues. We all feel it has made such a difference to our confidence and comfort, I really do hope more disabled people realise it will work for them too.

Had a lovely surprise when these two came to visit, my parents married sixty years and still in love.

When I saw the size of the deckchair I was gutted, it might sound daft but I really wanted to get in, I do try not to think me me me all the time, being annoyed and thinking life isn't fair doesn't help me however seeing everyone getting in the chair laughing saying how am I going to get out blah blah did get to me. I really hope I didn't show it but inside I was kinda thinking I so wish didn't have this M|D. I do sometimes feel trapped inside my body, my brain wants to do things and I have to except I just can't. Or do I 
This crazy lot arrived these are my Slimming |World Thursday Morning Nuthall Nutters who just happen to have become really good friends. These ladies do just sum up everything Slimming World stands for they are a kind loving family that supports each other along their journey whatever life throws at them, and my goodness life has thrown some curve balls at them all.
I am so pleased that they where not having no for an answer, out came the bus ramp to get me  over the first hurdle the chair was on a platform.
I can get myself out the power chair I can't actually remember how they got me in I think they kinda threw me in. We did it and you know what they got me out no problem and it was actually very dignified didn't even hurt at all. It was great to feel part of things not just on the sidelines watching pretending I don't mind.
Watching the food demonstrations I got all excited I know not at all like me to go home and make the sunshine salad, I had it all planned in my head shops on way home drrr then I remembered I have no kitchen daft bat me.
I have had yet another amazing day, I really can't believe how flipping happy and excited I feel, each day is getting better and better. I haven't felt this optimistic about life since I graduated as a doctor flip me that's a long time ago nearly 30years. 
 It's hard to believe just how I felt a year ago I really didn't think life would ever get better, I am learning very late that asking people to help me do things and using the equipment available isn't giving in. Its living with a lot more freedom and less pain. I just need to be careful as I am aware if money was no object there is even more available.
I am defiantly going shut up know as I am going to finish today on the high it deserves and I thank everyone for helping me achieve what I have today, apparently we should be OK as its only Mon to Sat that the bus lanes are in use, time will tell.

Saturday, 10 August 2019

Fluff up that tutu and wiggle that butt.

 Yesterday I braved the scary world of Skin Specialist in the search for the Rudolph free nose. This was so outside my comfort zone, I am really unsure why I have been so apprehensive about seeking help with my facial problems. I think have just been plain embarrassed not sure what about whether I thought it was being vain, think more to the fact that I haven't liked to ask for help I kinda thought people would think I am a little daft. Yes I still want to feel beautiful in a chair or not. Yes I am bothered how I look not for anybody else but for me. I am actually worth the effort. Sue Baites the absolutely lovely skin specialist put me straight at ease. I actually had a Carbon Laser mask, have strict instructions on how to care for this beautiful little face. It's going take me so long to do my skin care routine in the morning there won't be anytime before it's time to do the evening routine. Best get up an hour earlier. Also might just cost a little too oops sorry going to need a third income soon.
It was camera club last night, we all went off to take close up pictures of flowers umm. First time in power chair with camera and tripod, let's just say didn't go quite as planned. I moved my foot plates so could get closer to camera, needed to move about 3cm to reach my lens to focus... Forgot had chair on run speed shot forward over own foot into tripod, I did manage to catch my camera. So proud didn't cry, well don't want everyone to think of me as the poor little disabled girl so felt like best not act a baby. I did sulk inside though and put my camera away. On the bright side if I hadn't I wouldn't of noticed the geese. They were so funny toddling around the place, especially the back one because as he walked he kept wiggling his bottom, made me laugh. 
Got home feeling really fed up and Seabass had wee weed on the bed, at least it wasn't on my side. 
Today have woken up with more determination to find a way to manage camera and power chair and I will. 

 Spent the most amazing day with some wonderful people. I have been Raffle lady at an event in aid of SOBS Survivors of Bereavement from Suicide. What was really nice on my part I really am starting to not really be self conscious in the chair in fact I am wondering why I made so much fuss about it in the first place. We can't help how we feel at the time though. Going back to earlier it is heart breaking the knock on effect depression and suicide has on families. It is still so misunderstood. I really really find it so hard when people think it selfish and a cowards way out. A person feels so desperate, that their family would genuinely, be better off without them. Often leaving devastated families behind who then have to try and rebuild their lives with very little help and support. Charities like this needs all our help and today I feel blessed that even in my darkest hours I have been able to ask for help, it's not always easy for people. I hope and pray if anyone reading this may need help can find the strength To click the link here. And ring the helplines.
It's day 6 of no kitchen and another yummy fish salad. Fully food optimising all the way through. I am so excited for tomorrow the Slimming World Golden Bus is coming to Nottingham and I am part of it, going to be so much fun.
I am being dropped off and going to a grown up by myself, fingers crossed don't get into a pickle.

Thursday, 8 August 2019

When life gives you lemons... Smile and wave, smile and wave.

 Day 4 of the kitchen and I am determined whatever gets thrown at me I am going to stay calm I promise.
This is why I adore my role of a Slimming World Consultant both the groups I do are full of really special amazing people.
This crazy bunch are something else, this is us all kitted out ready for a day trip we are going on Sunday. We are off to see The Slimming World Golden Bus in Nottingham. I am sure its going be yes amazing just hope my umbrella arrives in time, or else I will be very wet. I have such an exciting few days ahead, its going to be tiring but fun.
I am so pleased we went to recharge our batteries at Trentham Gardens on Tuesday. 
Got home after work feeling so grateful, I have a washing fairy who magics the washing clean and dry while we have no washing machines. You always need your mum. 

 Just nipped to the toilet before I started my jobs and........ The toilet wouldn't work. Now just a little explanation my MD means I can not get from sitting down to standing up without being lifted or by being raised high in the air and kinda slipping of the chair onto my feet. I will do pictures one day.
This means I can't get out my wheelchair, off a chair, out a car and you guessed it off the toilet. So what I mean by my toilet is broken I mean the seat raiser will not raise. So until its mended I kinda got to go back to shouting I finished and wait for the other half to lift me off. This is challenging as you know what it kinda gets to me that at 49 and 3/4 I can't go alone at home and 2 other half deaf as a post, I am sure the street can hear every time I been to powder my nose. Note to self best not annoy him else I am stuffed.
Let's see how long it takes to sort it out, I am on the urgent list. Legs crossed time.

Other stuff going off which I will not bore you with,I have just been into the kitchen and it's full of flying ants.I kinda mean floor nearly black. Oh for MD what do I do while home alone shut the kitchen door, not much else I can do but telephone other half to warn him he needs bug spray.

I was feeling a bit smug and proud that I am still smiling,fully eaten healthy all day apart from missing lunch. Just had a tuna pasta bake out the freezer even popped on my Slimming World Facebook that I am going to  have strawberries. Just as I pressed enter,
Kinda hope it makes my spots bad as its tomorrow I go and see about my skin, as predicted skin looks best it has for ages. Think going stop waffling now and get some rest ready for my weekend adventures.

Tuesday, 6 August 2019

Away with the Fairies

 I really need to find more hours in my day. I need to find out how to edit this blog with the photos etc to make it look more professional. I am trying to remember progress not perfection.

Today has been the most exciting so far with the new car and the power chair. I can't remember the last time in my life I was this full of excitement and enthusiasm for just being in this world. Sounds a bit slushy, and I suppose it is, I have been dreading this time for 18years, I have tantrums, cryed, got very drunk, shouted and a mean screamed and shouted just because I didn't want to be in a wheelchair let alone a power chair. Now I am, and it's just so liberating. I need to pop these feelings here just in case someone in my situation reads it and it just might help them realise it isn't giving into the flipping disease, its living really living.

We have been to Trentham Gardens many times before, I have always loved it there. Each time I have relaxed and enjoyed being pushed around. Today though I have felt free, like a caged nutter suddenly realised. Seabass clipped to my chair so she was safe, we were off.

First stop a coffee, then I could actually go to the toilet myself. I cannot believe at 49 I am excited because I could confidently open a toilet door that pulled towards me and use the room without needing help. How I achieve this is for a latter blog somethings are personal.

Then next amazing thing, I was able to take Seabass for a drink of water, pick up the empty bowl and move holding Seabass and the bowl to go and ask an assistant for fresh water. These are all little things but they were just impossible 2 weeks ago. I needed both arms to self propel, I couldn't attach Seabass to my manual chair because if she ran, well I would just be flirted out my chair and splat.

We did get in just a little bit of a pickle, while I decided to take a couple of photos of the amazing fairies  Seabass managed to get herself tangled in the railings and I couldn't bend to help her but you know what a kind couple came to help. I wasn't embarrassed, shy or anything I just thanked them and we were on our way.
I actually loved being able to go places just to see what was there, without having to decide if it was going to be worth the energy it took to do it. We even went up a hill just because we could, I had just a slight panic as the ground was damp my wheels did spin and a little stream of mud flew through the air. I did chuckle as I always wanted to be a racing driver and it did also cross my mind, trust me to get stuck on top of a hill where everyone can see me in full view but I didn't get stuck so no panic.

The next pickle I got into was when I tried a different toilet, the door was just too heavy for me to pull open. This time a little old man came to help me, he struggled with the door being heavy too, maybe I should let them know the door is  too heavy for a disabled toilet. When I do maybe I should also mention that even though their disabled facilities are awesome they really could do with a Changing places toilet. I will put it on my to do list. Instead of me just moaning may be just may be I should say something that might improve things for others.

There are so many other things I want to do when we visit again, there are accessible picnic tables so I have to go again and take a picnic. I came across so many quite little corners in the garden that I want to go back to.
The next step is to be able to take my camera and tripod and Seabass, I am being patient and letting both Seabass and I get used to things first.

Today with my best smile I have spoken to so many people as just me, don't think any of them noticed me in the chair. They all noticed just how cute Seabass is I know I am biased though but she is mega  cute. I made a little boys day because he loved bull dogs and we kept bumping into him, he even came to tell me he had been stung by a wasp and didn't cry.

Been thinking this evening if I didn't have Muscular Dystrophy would I have appreciated these little but to me amazing things. I don't think so, who would be thankful that they can go for a pee on their own at 49. I truly do and I am going to bed tired and happy. Planning our next trip and picnic of coarse.

I really need to think of words other than amazing and fabulous.

Monday, 5 August 2019

Food Optimising with no kitchen

I really am proud of myself today, up at 7am and straight in the shower. Finished emptying the kitchen ready for the workers to come and rip it out.
Only hic up was I dropped the tea bags could of been worse could have been leaf tea.
Seabass hasn't liked the noise today she has been sat on my knee while I have been trying to do some work. All old kitchen out, am a proud owner of outside tap I will be able to water my plants from my chair.
 We only have a little hand sink in bathroom but we will manage. Our fridge is in the hallway and cooker and washing machine are outside.
I am determined to stick to Food Optimising but been so hungry today. The dinning table is now our kitchen area.
 Slimming World quiche and salad for lunch and chic pea curry n rice for dinner. Love my genius idea paper plate on top of my normal plate. Less washing up.
Been working on my weight loss page so going leave blogging tonight don't want to just gabble on. Need pj's and rest 12hours is too long for me to be this busy. I don't want it to end in tears as they will be mine.

Sunday, 4 August 2019

It's great to go up in the world.

 Well today been another fab day out and about in our wheels. I was genuinely excited this morning to have researched a long handled environmental friendly poop scoop. It is being delivered tomorrow complete with bags. I think that makes me officially a very strange person.

This is such a learning curve I have also realised that I measure my self worth on some very arbitrary and odd things. Like do I make people laugh, how attractive I am not, how much I weigh, have I spots, does my hair look good. One of the most amusing for me is can you see my knicker line in these trousers I sit on my bum all day so why does it matter. Well all these things can make a difference to me if I let them.

Today I got something negative in my head that nearly sent me spiralling into I am a useless person a burden on everyone no fun to be with. Don't get me wrong I am flipping lucky to have the people in my life I do but occasionally that's how I feel. Don't think it's necessary to do with having Muscular Dystrophy but it's jolly handy to blame it on though. We are all in control of our thoughts not our feelings. I have to acknowledge that at times that's how I feel whether it's justified or not that's how I feel and when I do that I can go on to have a fabulous day like today rather than sit in self pity.

Another outing in the car to the water sports centre, Seabass is really getting the hang of the power chair and ramp. Another amazing thing now is when we stop to look at things, I can use the seat elevator on the chair to yes raise me up a little. Normally all I can see is the hand rail or through the fence like in the top two pictures. Not anymore look at the difference in the bottom picture. I can see over like a groan up I tall person not down low in my world. These little things are going to make such a difference to how much of the world I can actually see. The other thing is my hands, they no longer get sore and dirty from self propelling, everyday I am noticing some thing else to be grateful for and I am truly grateful and happy for my new found freedom in my wheels.
Seabass and I are now both comfortable and snuggled on the chair. Looking forward even if a bit anxious for the onslaught of the kitchen revamp tomorrow.
I am also just off to read about other blogg hosting sites as it appears my comments only work if you are a Google account user or leave them anonymous. Watch this space for the next technical tantrum.