Rachel and MS

23/07/2023

2 whole years of MS.

Today is 2 years since I found out I have MS. 😢

I was totally unprepared to be told I had this 2 years ago. 🤯

I was fit, healthy, ran marathons, taught Loads of fitness classes weekly, could make plans without a second thought, could keep up with the kids having great days out doing active stuff, could party all night and have minimal sleep and still fully function with a spring in my step every day, until a few months before I got diagnosed when I was always tired and couldn’t feel my right side.

2 years down and I’m now only working part time, I’m only teaching 4 classes a week, no amount of sleep is enough and my memory is horrendous. 😔

MS has however made me put myself first (except for my kids, they will always be number one). It’s made me learn to say NO instead of trying to keep everyone happy, it’s even made me realise that I only have me to look after me and that I need to make myself a priority instead of prioritising other peoples wants.

MS absolutely sucks and I would do many things to not have it, but slowly I’m learning to accept it. It’s never going to go.

Hopefully in this next year I’ll master the balance of doing just the right amount or fun and rest and I’ll have more good days instead of bad days. ⚖️

Thanks to those who have accepted the MS version of me. 🧡

23/07/2023

Today is 2 years since I found out I have MS. 😢

I was totally unprepared to be told I had this 2 years ago. 🤯

I was fit, healthy, ran marathons, taught Loads of fitness classes weekly, could make plans without a second thought, could keep up with the kids having great days out doing active stuff, could party all night and have minimal sleep and still fully function with a spring in my step every day, until a few months before I got diagnosed when I was always tired and couldn’t feel my right side.

2 years down and I’m now only working part time, I’m only teaching 4 classes a week, no amount of sleep is enough and my memory is horrendous. 😔

MS has however made me put myself first (except for my kids, they will always be number one). It’s made me learn to say NO instead of trying to keep everyone happy, it’s even made me realise that I only have me to look after me and that I need to make myself a priority instead of prioritising other peoples wants.

MS absolutely sucks and I would do many things to not have it, but slowly I’m learning to accept it. It’s never going to go.

Hopefully in this next year I’ll master the balance of doing just the right amount or fun and rest and I’ll have more good days instead of bad days. ⚖️

Thanks to those who have accepted the MS version of me. 🧡

11/07/2023

After more then 2 months of what’s been a real rollercoaster, tomorrow is the start of Aubagio. This will by my third attempt at putting MS back in the back seat instead of the drivers seat.

I’d be lying if I said I was looking forward to new meds as I seem to always get the side effects but as long as they aren’t like tecfidera side effects I should be ok on these.

Headaches, nausea, hair thinning…….

I’m ready but I really hope they don’t last long.🤢😢

07/05/2023

After a week of feeling rubbish yesterday I woke feeling a little better. Enjoyed my day which I’m glad of because today I feel horrendous again. For someone who is so fatigued at the minute I have no idea why my body wants me awake at 5am. 🤯😡

One of the hardest battles is finding balance because there really is no warning sign. One minute you are absolutely fine and the next you are written off and the recovery takes weeks rather than days. 😢😢😢

So hard to know what to do for the best.

Today I am going to be a zombie so got to fuel my body right in hope that good food will help fix me.

But first coffee. ☕️☕️☕️

Photo was yesterday when I felt well.

03/05/2023

Social media vs reality.

After Fridays appointment with the neurologist my brain has been in overdrive. That and lots of covering classes and trying to live my life has caught up with me.

Need to change meds which means lots of bloods and appointments for MS coming up.

This will be the third change of MS meds. Too many side effects meaning I’m taking tablets to try and remedy side effects which is getting all too much.
12th May will be the last tablet I take of tecfidera before a cleanse and reset and then I’ll be starting on Aubagio.

Really hope that one day I can get up and just have to take the one tablet a day instead of taking so many tablets I should be rattling.

27/04/2023

Tomorrow I’m seeing the neurologist to discuss the new brain lesions and to find out what the neck and back MRI shows. Also time to check if my bloods are back to normal and also to discuss new treatment options as the tablets are giving me too many side effects.

After 26 weeks waiting for the scan and a further 10+ weeks waiting for results my anxiety is through the roof tonight as I can’t push it to the back of my mind like I have the last few weeks. I wish I could be switched off until tomorrow.

26/03/2023

Need this

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19/03/2023

Another reminder from before I knew I had MS. CT scan came back clear so I made a joke about it as i thought there mustn’t be anything wrong and that I really did just have a trapped nerve. ☹️

Wasn’t until the MRI scans that lesions were seen. 🥺

MS sucks big time. Still waiting for the day I wake up and don’t have to count my spoons. 🥱

10/03/2023

Back when I had absolutely no idea that I had multiple sclerosis. 🫣🙄
I remember the loss of sensation taking over my whole right side. Someone mentioned MS to me and I shot them down because in my uneducated mind, only old people got MS and MS only meant walking sticks and wheelchairs. 🤷🏽‍♀️🤦🏽‍♀️

24/02/2023

Its been One year since I started on tecfidera. 💊💊

Side effects have mainly all gonna now. Most went in the first 4 months. The only problem I have with tecfidera now is that I am now suffering from urticaria which means taking more meds to stop that from hurting when it does appear. 😞

Never seems to be a quiet moment with MS. If I’m not counting my spoons I’m taking meds to settle symptoms or waiting for the next neurologist or MS appointment or MRI results. No wonder my poor brain can’t function properly, and that’s just the MS part of me. There’s a whole lot more to me than MS but it seems to be shouting loudest at the minute.

23/02/2023

How does having an infection make MS worse?

I used to wonder why when I got ill I was at risk of getting worse because I have MS. 🤷🏽‍♀️
Other people have asked me why it’s worse and I think some might even think that when I say it can be worse I’m joking. 🤦🏽‍♀️
It really isn’t a joke. It really is worse in my experience.

I’ve battled with tonsillitis for years and had many ear infections and only since I’ve had MS have these put me to bed, because as soon as I get an infection my body makes my MS symptoms show up.

Right now I’m battling a chest infection which has made my fatigue absolutely horrendous and my brain can’t function right. I’m already back in bed and the day has only just begun. 😭
Luckily for me this isn’t a relapse and once my temperature regulates my MS symptoms should go away.

17/02/2023

When I got diagnosed I had no idea what multiple sclerosis was. I knew a couple of older ladies who have MS that I used to teach aqua too but I didn’t really know what MS was.

MS is where your immune system attacks the layer that surrounds and protects the nerves called the myelin sheath. The attack damages and scars the sheath, and potentially the underlying tnerves, this means messages travelling along the nerves become slowed or disrupted.

There is no cure for MS so I’m never going to get better. However I will have good days and bad days.
I’m still trying to find the balance so as I can Atleast have an equal amount of good days to bad days instead of more days bad then I do good which is where I’m currently at but I’m on the right path and learning to listen to my body more.

14/02/2023

Yesterday was finally MRI day. After seeing my neurologist back in August it took almost 26 weeks to finally get a scan done.
Now just the waiting game for the results to see if I have any more lesions on my brain, neck or spine. Best case scenario is that there aren’t any new lesions.

I can’t say I am a fan of these machines but the more I go in them the less it bothers me.

I’m more bothered by the effort it takes to remove all my earrings to go in the machine. Trying to get all those little pretty coloured balls off the earrings without dropping them, or them falling inside my ear (can that even happen) is a complete nightmare, but eventually with the help or someone else all were removed.
Now I must remember not to get any more ear piercings!

Once in the scan room…
Ear plugs in. ✔️
Headphones on, (dance music playing) ✔️
Close eyes ✔️
Cage covers face, keep eyes closed ✔️
Move in to machine, keep eyes closed ✔️
Machine starts and it makes loads of noise, keep eyes closed. ✔️
In other words I can’t open my eyes in that machine. When I do I feel trapped, but if my eyes are closed I’m free. Try it if you have a scan.❤️

All was fine until the machine started doing those tiny pulsing movements. As soon as they started it made my vertigo horrendous. (One of my MS symptoms unfortunately) 🤮 Nearly pressed the emergency button because I felt so sick but I knew if I pressed it they would stop the scan, so I battled on thinking about anything but feeling sick or opening my eyes. I couldn’t stop moving my eyes and I’m sure I was still blinking with my eyes closed 🤔

After around 40 mins the scan was done and I could leave. Luckily I wasn’t physically sick but I felt sick all evening.

Woke today with a pounding head but that’s probably just the tension or the stress of trying to put all the earrings back in.🤦🏽‍♀️🤣

Just a few weeks to wait now for scan results. 🤞fingers crossed for no new lesions.

14/02/2023

Welcome to rachelandms.

I’m going to be posting about how my multiple sclerosis journey started, where I’m at with it now and the bumps in the road I come up against.

This is my account and views on my life with MS, I’m no doctor, but i am qualified when it comes to my thoughts and feelings of my life with MS and how I feel with it mentally and physically.

I’m not one to shout from my normal account about my MS.
Whether that’s because of embarrassment, not wanting people pitying me, not wanting to hear people say several things where it would make me want to just tell them where the door is or just because I’m far too tired to talk about it.

This account will be different. I will be laying it all out on this account to hopefully raise awareness to those I know and anyone else who may want to just see the life of someone else with MS or their families and friends to see what life with MS can be like.

The stories from my previous posts on my personal account will be coming up with more of a back story over the next few days.

Feel free to message me and keep an eye on my stories too. 🧡

#🧡