Blogging Parenthood Personal

Spinraza, Schooldays and Self Care.

Hi Everyone! Welcome to another LONG, LONG… LOOOOOOONG overdue blog! It’s AUGUST, almost September and this is only my Third blog of the year! I can’t quite believe that, I am a major let down. 

Let’s get right into it with the scene setting!…
DRINK:  Today I have THREE drinks! I am in the office, baby-less and I am fully making the most of it! Sparkling water (yes I am one of THOSE weirdos), Hot coffee & Jimmys Iced Coffee.. I am awfully addicted. I know they are terrible, and filled with sugar but please indulge this small addiction. It could be worse, I was almost addicted to Morphine a few months back.
BLOG THEME TUNE: Old Taylor Swift.. like when she used to sing country. Like, Taylor BEFORE Harry Styles, when she was dating a Jonas brother.
OUTFIT OF CHOICE: Husbands mustard shirt, Pleather trousers… Clothes that were grabbed out of the wardrobe whilst Mase was napping, mismatched, but I’m trying to work it.

So, today is an update blog really as I’ve been M.I.A for some time! I’ve called it Spinraza, School days and Self-care so that I can quite easily go through the big or not so big things that happened since I last wrote to you guys.

Let’s start…

Spinraza

This is probably the biggest thing that has happened since my last blog, certainly to the families that are affected. Spinraza is the ONLY drug used to treat my condition SMA (Spinal Muscular Atrophy). SMA is complied of various types, in various severities. Everyone with SMA is SO different when it comes to muscle strength and personal needs. Something that caused me massive problems when I was pregnant as it’s pretty impossible to write a “case study” of an SMA patient. Anyway, Spinraza for many families, kids, and adults with SMA was HOPE. Hope that individual conditions wouldn’t progress, that abilities would be kept and in some cases that muscle strength and definition could actually be gained. Well, that chance for UK patients has been taken away completely. NICE (National Institute of Clinical Excellence) have refused to recommend Spinraza for the treatment of SMA in the UK. At all.

This is absolutely appalling news for everyone in the UK, and means that even babies with SMA type 1 (the most severe type) will not be allowed this treatment, meaning that unfortunately many of these babies will not survive due to muscle weakness.

For me, Spinraza wasn’t something I’d ever even considered, as my condition has been “stable” and pretty much the same for about 10 years. BUT! Had I been offered this drug at the age of 10/11 when I still had the ability to walk, climb stairs and stand up from the floor my life would be significantly different now. I SO want this for the kids that have SMA now. With the advancement of medicine, and also technology I guess I figured as a kid by the time I was an adult there would be some ironman typed body suit that I could wear to help me to get around and get on with my life… but it seems that is still a way off.

So much so, I was considering Spinraza as a viable option. Don’t get me wrong, I love my condition, I love who it’s made me, I love my chair for helping me get around and for cutting in queues. BUT come on, I am over this now. I want my independence now, for my son.

It frustrates me massively that the NHS will treat people with conditions, exacerbated by their own actions and lifestyles but they REFUSE to treat people with conditions that are completely out of their control. They make the choice to deny them a drug that could severely alter their lives, their futures.. and sometimes maybe even offering a future to someone that they would be denied without the help of modern medicine.

If you want to help, please, PLEASE, PLEASE sign this.. 

https://www.change.org/p/theresa-may-mp-make-spinraza-available-in-england-to-all-spinal-muscular-atrophy-types?recruiter=360350572&utm_source=share_petition&utm_medium=facebook&utm_campaign=sign_checkbox&utm_term=psf_combo_share_initial.pacific_abi_gmail_send.variation.pacific_email_copy_en_gb_3.fake_control.pacific_email_copy_en_us_3.v3.lightning_share_by_medium.share_by_medium

Schooldays

Topic two on my update list, is SCHOOLDAYS! Mason is now 9 months old! And he is in nursery! I can’t quite believe it, but he LOVES it, and I love it too. He only goes two afternoons a week but it’s such a big help to get me back in the office and it stops me from depending on family so much. I think what I’ve found out is that asking for help is OKAY. I was stretched from pillar to post a few months ago and it felt like I wasn’t doing anything efficiently or to the best of my ability.

Now Mase is in nursery I can be in the office for 4 hours, go home, have a cuppa and then pick him up. It sounds like such a small thing but it is huge in terms of our day, and planning working weeks. I’d really recommend it. Also the fact that he was introduced to it so young meant that he wasn’t clingy at drop offs and he’s grown to absolutely love his key workers and create close bonds with them!

Self-care

Self-care is something that is thrown around the internet ALL of the time at the moment and at first I wasn’t really sure what it meant. It seemed, every time I saw a post about self-care it was a video of someone deploying a bath bomb, or eating their body weight in chocolate… While all those things are bloody brilliant, the self-care I’ve had to find is slightly different. I’ve found myself really, sort of, not present for the past month or so. Not enjoying the usual shitty reality TV I watch to wind down, ignoring my phone, drinking too much wine, depending on painkillers to sleep. It’s been awful because I really don’t know WHY!

I wasn’t “down” I was still “happy” but I just felt kind of, numb and honestly there really was no reason! I was so happy with everything. I guess I was just overwhelmed.

The worst thing is, I couldn’t tell you how I “got over” this either! I just basically STOPPED feeling guilty.. I also spoke at length every night to my husband when Mase was asleep. About a number of things I felt bad about and that I was worried about.

Recently my worries have really been about parenting, and the quality of parent I am given my disability. This is SO stupid as I know I am an amazing parent and just because I can’t physically lift him out of his high chair or car seat, really means NOTHING. It was like there was someone in my head nagging me, questioning my abilities and I have NEVER listened to that voice before.. like fuck am I going to start now.

My husband said something that really resonated and made sense… “Mase doesn’t even know what a wheelchair is, he just sees his mom who loves him.. and even when he does that won’t change a thing!”. When he said this, it just kind of made everything click into place. As far as Mase knows my chair is the same as his walker he loves so much, and he see’s his mom who is there every day to hug him, feed him and put him to bed! He really knows nothing else about it.

So, I’ve pretty much accepted. I am one person, I can’t do any more than I can do, worrying about things won’t change anything.. and everyone else is pretty much oblivious to my nagging doubts and worries…

….So it’s back to business as usual.

 

 

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