Health update/getting organised

So as most of you know yesterday afternoon I went to go and see my consultant about the pain in my back and my hips.

My mum is always being you don’t need to take a handbag with you I’ve got everything we need well somebody was happy when I had an array of snacks for her to choose from while we are waiting! Not to mention my kindle. It was like, I was the mother and she was the child!

I felt like I overtook because when we go to receptionist desks and they asked my address they immediately look to my mum instead of me and she uses recites it, not this time.

So me what I should and to see the consultant and basically what she said was that he was happy that my hips were healthy for somebody in their 20s with cerebral palsy who sits down all the time, my mum was worried I need a operation thank goodness that is not happening. and from his point of view he was happy that there was no information of my arthritis in my facet joints…

I explained to him the pain that I was getting was quite severe and that I can only bathe once a week and I will rarely go out after all despite, having a new wheelchair that hasn’t helped with the pain and neither has a new mattress. I was getting a bit frustrated and a bit tearful because I didn’t want him to think that I was making up my pain levels, it’s gotten so bad now that my care company keep track and have been emailing the GP to do something about it. So there was little he can do in his department so, I’ve been referred back to Iona Collins my spinal surgeon from 2016 urgently to see if the disc that hadn’t warranted surgery back then has deteriorated anymore (I have a sneaky suspicion it has, we all know our own bodies)

I’ve also been urgently referred to a pain clinic which in his opinion I should’ve been sent to a long time ago because now this is hard to admit but despite my GPs advice I’ve been topping up my morphine doses When the pain is extremely bad which is also very dangerous but it’s not as if I’m doing it because I want to get high I’m doing it because the levels the doctors prescribe don’t have any affect on my pain. (I only did Oramorph when I absolutely need it because it’s disgusting it tastes like nail vanish remover and I make sure to leave a gap every four hours so it’s not as if I’m swigging it every five minutes) so hopefully they’ll be able to find some medication that will help with the pain and myself and my mum reckons it will most likely be done in pump form.

So now it’s just awaiting game again so whilst there is hope and positive news, there is also despair because I have to manage with painkillers that don’t work in the meantime.

Right now I’m focused on getting organised. I’ve got two years with the bank statements digitally downloaded on my iPad and in separate files in order so that if I should need to send a PDF off it can be easily done. (This file which houses my two bank statement files for the past two years is also password protected – Smart thinking eh?)

Thanks to Mel my PA for my paperwork regarding things like my DLA, car insurance, medical letters it’s all in a nice tidy file with an index so when it comes to filling out forms for student finance it’s easy to find certain pieces of evidence.

Our next big thing is Mel, is now to take me to to appointments instead of my mum which is a big step for me because I like to have my mum with me but that means she has to take time off work so it’s time to put my big girl pants on becauseI need to start doing things without her.

Monday we have two jobs to do in our session; set up a diary to keep track of what we do during social hours, track my appointments, pain levels and important assignment date for when I start my degree at home. I’m also going to ring the housing office to see where I am in regards to getting a flat because it feels like I’ve been waiting years now.

Once we’ve done that, we are planning a trip to IKEA where we going to find some small storage shelves and a small desk ready for me to set my study space/office ready for September. The one thing I won’t be needing? Is stationary. Just a file, my laptop, my printer, dividers and some lined paper and also making sure that I’ve printed out the syllabus for the year and that’s in the front of my fire. We are on the hunt for some nice motivational posters as well – so if anybody can pointing in the direction of some I’d be truly grateful.

In the meantime I’m hoping it’s not a long wait to get some treatment for my pain because this isn’t the life I envisioned for my 20s. Fingers crossed and I’ll remember to keep you updated.

Lots of love

Rach

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Health update… read the news about carefree and consequences and don’t forget to buy your copy.

So the injections that I thought were going to ease my arthritis aren’t going to happen. All this because my arthritis is no longer in my joints but is now in my muscle tissue I asked the doctor about steroids and she wasn’t too nice about it I even asked for diazepam and repeat prescription but all she kept banging on about was addiction.

Meanwhile I’m in daily agony. All that she says was she was going to refer me back to the original department where they can deal with me.She make me sound like a 20-year-old begging for drugs just to get high not to function.

I only found out because I chased up radiology by phone. When I said to the doctor about this she said ‘oh I was going to drop you a line eventually,’how long is eventually?

Myself and my mother are going down there some point this week to sit face-to-face to her and drive home how serious the situation is. She had no empathy even when I was crying on the phone, she did not understand how much this is taken of my life. I’m also reporting her to the general practice board because she was so rude and kept talking of me when I was trying to explain things, making me frustrated.

So whilst the specialists play tennis back and forth With what to do about my health I have a few Diazepam’s left, Naproxen which doesn’t do shit except make me tired and morphine that just turns me into a zombie or an itching, sweating mess.

When I know more I’ll let you guys know as this is the purpose of my blog. By the way my Ami flared up massively today so I couldn’t go on a picnic with my carer, I literally spent the day sleeping with a massive migraine.

But never mind I’m just focusing on selling my book and counting down the days until I see Michael Bublé. You need something positive and keep to going right?


Don’t forget the carefree and consequences is available to buy on Amazon. It even has its own dedicated page on here where you can read peoples comments and reviews. Some people like it because it reminds them of Paul’s Zindels ‘darling my hamburger’ It is set in the 1950s and has a similar storyline to mine. Did I also mention? Carefree consequences, is being turned into a series with the three books?

I’m not done with the Alexander family and their friends just yet.

Read the first one while you can.

A sunny Monday.

I‘d woken up in quite a lot of pain as my sciatica kept me up through the night. I even missed my mum going to work and she always pops a head round my bedroom door to say good morning before she goes off, But seeing the weather so sunny outside I definitely wasn’t staying in, The morning seem to scream at me: “wear your yellow lemon dress” so I did. Before my social sit, I managed to read the notes for my next projectband began setting up a document ready to start typing on Friday when I have a day in. Plus swapping over to a smaller handbag I had a quick lunch of a whisper bar and some pretzels, was hoisted in my chair and we went on our way .

As we were walking up to the bus stop (we chose a long walk to the top of where I live so that we can get soaking in the vitamin D) It was a little bit windy so I felt like I gave everyone a bit of the Marilyn Monroe flash but, who cares! Whilst walking we managed to tuck it in so it wouldn’t raise up again. The first bus that came to us drove straight past us as he already had a gentleman in a wheelchair on board, he said there would be another one there in 10 minutes (this turned out to be 30 minutes man time) but he did manage to give us a free ride so I wasn’t complaining! I was struggling to reverse into the designated space for the wheelchair on the bus because some woman refused to collapse her pushchair on an account that it was a disabled buggy and yet the child was running around on the bus not needing it. So after about 70 reverse attempts I finally got in my spot.

Finally we got into town I received a lovely text from my mum saying that she was so proud that I got out today even though I was in pain and that really boosted me because I was with a carer who didn’t know Bridgend town well and I’m crap with directions so I did my special counting method so that I didn’t go into a panic attack. I could’ve punched the air with how proud I was of myself for bringing myself out of another panic attack.

Then we went in to my favourite shop, WH Smith where I bought my woman’s weekly fiction, my trashy take a break and the right kind of writing magazine that usually read (The last time I sent to carer into town to pick up magazines when I wasn’t feeling well she brought back the wrong ones) I then got my sister a birthday card.

Then we ambled up Costa where it was time for afternoon tea and Keira, my carer for the day didn’t care that we went over our allotted time as she had nowhere to be after the day with me so that meant we could relax in the sunshine and enjoy a cup of tea, people watching. She told me she had older daughters similar to my age, that she’d been divorced 11 years and her partner is in the police and that she even worked in a prison and she’s a solitude Sally like me and that she loves Zumba and walks.

ven though I’m dieting there was a lemon cake involved and after the wobbly table spilled the milkI learnt that iPhones are resistant to dairy which was a good thing. Keira even insisted on paying.

We started to make our way back to the bus as I needed to use the toilet to empty my catheter bag but I stopped in to a Thomas Cook travel agency and picked up a brochure of Cyprus and Greece so that my mum and Rich can go on holiday! (As much as I would love to go, I won’t. Because, it won’t be a proper break from my mum because she would still be doing my care and for some reason whenever I go abroad I’m ill or something plays up so it’s not fair on them both.) I’ll save up some social hours and book a three day break in Devon or Cornwall.

I Emptied my catheter and then we got on the bus home and it was much quieter. Our driver gave us a free ride again and this time we stopped at the library and did the short walk home.

Keria even stayed when she knows I can’t reach the intercom button to let the other girls in to make sure they get through the door. The next thing I know I’m being hoisted up into bed. Am I tired? Yes. Did I have a lovely afternoon? Of course I did and I think I found a friend for life with Keira. As I write I am in bed now in my pyjamas, in light pyjamas I might add and have a close my window? Of course I haven’t it’s nice to get the breeze (sunshine can be very addictive) and haven’t even shut my curtains!

I then got my 3:30 girls to tidy up my room a little, and folded away some pyjamas and putting my winter blanket back into our porch as I won’t be needing it for awhile!

I’ve challenged myself to try and do all four of the social calls this week and tomorrow I plan on having a little picnic by the miners memorial where there is benches and lovely flowers. It’ll give me a chance to fill up my new flask I bought today and testing whether it can hold hot tea without leaking.

Now it’s time to read my magazines and take some painkillers. You may think that all sounds easy but when you’ve had a voice in your head that telling you that you can’t go out because the pain will start it’s hard. But today I proved that was utter bullshit and I am one happy little lady that I managed to live a day and not think about the pain all day

The Forgotten Children of Romania

Watching this documentary on Channel 5 about finding a home for Romanian disabled children and I’m not ashamed to say I’m crying! So grateful I live in the UK and have fantastic care and facilities unlike these children through no fault of their own. END INSTITUTIONALISATION! Everybody has a right to a good quality of life!

If you want to see how disabled children are treated in eastern Europe, go to YouTube and type in ‘The forgotten children of Bulgaria’. I don’t understand why people aren’t intervening.. . this iso inhuman!

What about the families?

People always praise disabled people for being ‘remarkable’ and ‘inspirational’ well what about there families? If it wasn’t for my mother I wouldn’t be as strong and independent. So, instead of calling me inspirational how about you call my mum that? After all, she doesn’t have to do all these things including wiping my sh*t does she? But she does anyway. I for one am extremely grateful. My mother is my best friend and biggest supporter. So please, instead of calling me inspirational tell my mother. Because she actually does deserve it.

Pain

Pain. Your like a suffocating blanket You’re the reason I cry You’re the reason I wish I was somebody else. Your the reason people can’t cope. You make me feel like running away. Pain. Sometimes I wish you’d fuck off. You’re the reason why I couldn’t go out today. You’re the reason I’m miserable, for making me feel that the simplest things are impossible some days. But, thank you pain. Because of you I’m gonna fight until you fuck off.typewriter-peach-2