Changes in priority

Along with long term illness come huge changes in your priorities in life.

Party dresses, handbags, hair styling shoes are a thing of the past and exchanged for comfortable, loose clothing.
Going out to the pub, for a meal, coffee and putting money beside for these events become a yearly event or non event.
Face creams, make up, hair dye, hairdressers, barbers, personal grooming are so non existant that they may as well be a story in a fairy tale book.

Life not only changes but all the little things you did for yourself, took for granted and treated yourself to. It is no longer practical or affordable to do many of the things you used to because most of the time you just don’t care about how you look, life becomes about how you feel. We are not able to spend time dying our hair, creaming our face, putting make up on because our aching painful numb limbs are not up to it.
We are too busy concentrating on walking, moving, wondering how the heck we are going to do the things we are supposed to do when we can barely move let alone perform tasks.

And the strange part is, it isn’t always something we notice slipping away until something prongs us with past memories or routines. It happens over time, slowly but surely slipping away and becoming part of our pasts.

Personally I now live in vests and short pyjamas, not only are they comfortable but easy to take on and off and they keep me cool as I sweat really badly these days.
I now get excited over new pj sets and I mean really excited and I put them on straight away.. Such as my new cow vest and shorts set.. I pretend the cows are mooing.. much to my sons and partners amusement and then offers of a trip to a psych ward..

I live in slippers when I can get about the flat, the soled ones as I find the all cotton ones way too dangerous and I slip in them constantly.
Yet..
I used to live in heels, never under a 3 inch heel and couldn’t walk in flats at all.
I used to be nicely dressed and full make up on every day, regardless if I was out, popping to the shop or in the house all day I was always well dressed and always in skirts.
I used to go out several times every week, for coffee, drinks, or just a walk in the park.
I mouisterised twice a day, bathed one to two times a day, plucked, shaved, dyed and brushed my hair, styled it, changed my clothes twice a day.. I had a thing about that.

I look back as I lay sweating in my Chip N Dale pjs, grey streaked hair coiled in a loose bun, stubbly legs, arms, dry skin,, rashed body and I think..
I no longer care about the things I did for myself, they are no longer a priority for me and I don’t miss it.

My life is so different now, my main concerns for myself is my health [ rhyming as I go 😉 ] and finding ways to still live happily despite my conditions.

Priorities change beyond recognition when you live with health issues, along with the extra money being unwell costs. It is not cheap being ill, your money no longer goes on clothes, self grooming, pampering but house aids, special foods, meds, high heating as we suffer badly with the cold. Electric bills for a heater, electric blanket etc.. Transport to appointments, black out blinds, loose clothing, batteries for scooters.. The cost goes on and on and on.

The one and only thing I do at least once a week is put on mascara. That is the only pampering I do for myself, I put it on for me, my benefit regardless of if I am in bed or not.

It makes looking at myself a little easier, makes me feel that little bit more feminine, more alive. I glimpse a bit of the old me, the past vibrant, go getting, fun loving me.
It’s my war paint, my ‘stuff you’ to my conditions and my determination to get through them.

After all, my life may have changed, my body, my health my priorities. But me, the Stacey inside me that will never give up regardless of how much it costs me personally, never be bested by life and won’t let anything totally eclipse me is still there. That will never change.

Another appointment over with

I didn’t blog yesterday as I was feeling really unwell.

My home assessment went well, I think! She arrived at 9.30am which I appreciated, not keeping me waiting for hours.
She was really pleased with all the photo copied letters and said they will make it so much easier during the descion making, and they will keep them on file.

She asked all the same questions that the form did, and a few of the answers were different as my condition has changed since I filled out the forms in February. But I also had proof of this and other things, such as I use a wheelchair, have and am deteriorating, my neuro problems and bedroom living through my doctors letter.

She did a slight medical at the end, but said she wouldn’t make me do the walking ones as it’s clear I can’t do them. She did sensitivity touch tests on my arms and hands, apparently I only felt a third of them. Then started doing them on my legs. Well, they were not having that. As soon as my leg was lifted off the floor they went into mad spasms that I then had all day, but she stopped straight away and said shall we try the left one. Of course that one started too! She left my legs totally alone and did it genuinely not as in, ohh you won’t do it but I can see you’re bad I’m not causing you more harm.

Then I had an eye test with similar cards as an optician but as my left eye has only had partial sight since Saturday that didn’t go great either. But ’twas fine and she understood.

Over all she was understanding, very empathetic genuinely so and very sympathetic. She was saying how isolating my life must be, how she’s keeping her fingers crossed for my claim and my home move happens really quickly.
She was not the dragon I was expecting and although she was here an hour and a half it didn’t drag nor at any point did I feel she was over bearing or not believe me.
So just the wait now to see if I’m accepted, it can take up to six weeks so I will have to just be patient, the worse of it’s over.

My eye pain was pretty bad yesterday, which caused a massive headache and then my pain kicked in and my muscle spasms due to the exam. I took myself to bed and eventually fell asleep until the evening, waking up feeling a lil better but still not great. So I was up until quite late, well early in the morning until the symptoms eased enough to enable me to sleep.

I have no appointments today, yay! Tomorrow is my x rays, ultrasounds and bloods so I’ll be at the hospital for a few hours. But that’s tomorrow, today I am taking to rest and recuperate a lil. Then after Wednesday it’s just a vitamin D injection appointment and that’s it for a month or so. I’m looking forward to the breathing space, it’ll be nice not to be constantly at the hospital and not be constantly examined and tested on 🙂

MRI

My MRI went quickly and smoothly. My Father and partner came and my partner got me a coffee and a lil cake before I went into the waiting room, yum 🙂

I was a tad embarrassed that the radiographer had to help me out off my wheelchair and onto the scanner table, then lift my legs to put a pillow underneath. But I guess I need to get used to that sort of thing.
The machine was really loud, despite my noise reducing earphones but apart from that and the neck spasm that jolted my head slightly during the scan all was fine.

Just a few weeks wait for the results now. I have requested to see my brain scans, and the neurologist will do so on my follow up appointment. I have a fascination of seeing it, it’s my brain and I have the right too so I am. No stamping of feet needed either.. 😉

Home resting back in bed now. I want to make a loaf of bread today if my right hand will let me. It’s something I do every so often, I find baking very therapeutic which a lot of people are surprised by. The fact I bake, not the therapeutic bit 🙂
I also feel a sense of satisfaction making food from scratch and it being eaten. I can’t bake as I used to, but I do when I can. Sitting on my perching stool and pounding dough is great free anger management 😉 Freshly baked bread mmmm it’ll make the flat smell great too 😀

I have sorted all my hospital appointment letters, doctors and specialist diagnosis letters, ESA award, physio, home move documents etc ready for my Atos home assessment tomorrow morning between 9-11am. I really hope it goes ok, as I’ve said I’ve nothing to hide and I’m not concerned about that. Just that they believe me and my letters and be able to give me extra help.

When I move I will need a carer as my son isn’t moving with me and I wouldn’t have him caring for me in that situation. Them granting me pip will enable me to have a carer, so tomorrow’s appointment is really important for me.

Fingers crossed and gypsy luck it will all go well and I’ll my assesser will understand and believe in my conditions. I hate the fact I have to prove myself, but I can understand why I have to with all the scammers they have to deal with. Those people have put people like me in the situation of having to prove ourselves, I resent that. But it’s no good getting annoyed, it’s how things are so I just need to be myself and be honest. Two things I’m good at.. 🙂

Noise and appointments

So my assessment wasn’t for PIP but ESA, which was a big disappointment. It went fine though and the Dr was lovely and even ordered me a paid disabled taxi back home! I am shattered now, aching and sore. At least this assessment will go towards my pip one when I finally hear from them.

It was a quiet evening, I spent a lil time with my son which was great. Just joking about and eating, I do love spending time with him. No matter how old he is I think we will always share a close relationship. He is so like me in looks, literally a male version of me. He’s straight edge, as in doesn’t smoke, drink, party, looks after his health and body and has been a vegetarian since he was 9 years old. He chose to become one, I’m not vegetarian, and has never eaten meat since. It takes a lot to stick to your guns about his lifestyle like he does and I am so proud of him and always will be 🙂

Today is Monday do the school kids are in full screaming mode until 5pm. I live across the road from a secondary school, which was brilliant for my son as he went there but by god the noise in none stop during weekdays. For some unknown reason they scream and shout excitedly continuously AMD on their way into school at 8am which I cant understand at all. The only screaming I did at school was to be let out!
I suffer from light and noise sensitivity now, mote delightful symptoms of my conditions. So the noise is like nails down a chalk board, my nerves get badly frayed. I can’t do much about ot though and won’t have to deal with it when I move so for now all I can do is put in my earplugs and grumble about it under my breath.

I will be resting up now as the trip out took a lot out of me. Im relieved it’s over with, and now just have to continue to wait for pip to get in touch. I’m not in any rush though, waiting is something I have gotten very used to. Im off to have a nap now the grass cutters have stopped! Hopefully I will grab a couple of hours before school ends and the shouting starts, fingers crossed! 🙂

Having to prove I am unwell

Yesterday’s football was interesting and cheered my partner no end as somehow Arsenal won.
As much as I think it’s great for how it helps kids get into sport I think it ridiculous how much footballers earn. They can earn up to £300,000 a week.. A WEEK! Seriously, how is that feasible? Yes they train hard, travel etc but surely kicking a ball from one end of a pitch to another and kicking a ball into a net isn’t worth that wage. Doctors, specialists, nurses, people who save lives should earn it surely.. Yet their wages are not even a fraction of a footballers wage. Someone said yo me once, ” I bet you wouldn’t complain if your son was earning that money” to which I replied, I still would! I really would too, I would be proud of him, happy he was doing something that he enjoyed but wouldn’t think he should be paid that much. I don’t care what job he does, as long as he was happy in it and earns enough to see him through. I am proud of him no matter what he does, regardless of what that is. Earning £300,000 a week wouldn’t make me more proud, money isn’t the most important thing in life. I would take happiness over money any day.

My medical assessment is tomorrow morning so today I will be sorting my proof letters and putting them in a folder ready for the assessor to look at. I am going to be wheeled to the desk and hand the folder over, then she can ask questions based on the letters and information that is in it. I thought this would be easier than them asking all about my individual symptoms and me getting into a tizzy or constant word confusion. I have to take my meds too and any aides I use at home. Well, this will be difficult as I can’t exactly bring my bath lift, toilet frame, perching stool, commode and bed rail. I could carry them in a kinda leaning tower of Pisa around my wheelchair but I don’t think that would be practical or safe. So they’ll have to put up with the list I will have in the folder. I still hate the idea of having to prove I’m unwell. If I get someone who doesn’t believe in ME, which is very likely, then I have no doubt my aapplication will be denied. I really don’t want to go through an appeal as it can take upto a year to sort it out. Errgh I am really really not looking forward to it! My Father is coming with me and I’m glad he is. He is great in situations like this and keeps me calm and focused. Something I will need to be before I go to there. Fingers crossed it’ll go o.k and they will believe I am ill and not lying about it. Here’s hoping!

My health continues to deteriorate, the head lapses are becoming longer, more closer together and disorentating. I constantly feel as though I am not in reality, everything is feels dreamlike and out of synch. I have determined I will call the drs on Tuesday to see if I can chat to my doctor. I’m not going to wait any longer as it’s very unpleasant to be like this and go through continuous and more impacting head lapses everyday.

Once the forms are sorted, washing machine put on and clothes laid out for the morning I am staying in bed and resting my screaming muscles on my electric blanket. I couldn’t manage with out one, it helps to ease my symptoms and warm my limbs into movement. The next invention I am looking out for is an all body electric blanket suit. That would be awesome! Mind you, if any inventors made on due to reading my blog then I want a cut in profits and a free suit please! 😉