Miss Wibbly Wobbly, MS & Me

30/05/2022

Today is world MS day, 10 years ago almost to the day I woke up blind in one eye, I was working away and had no idea what was wrong with me. I was scared and alone and the doctors were talking about brain tumors.

When the day finally came that I was diagnosed with MS it was a huge relief.

It's been a long journey, it's destroyed friendships, jobs and relationships over the years but one thing it won't destroy is my determination to fight it.

It's tried to take my legs, my eyesight, my ability to talk, swallow, think straight and even my ability to use my bladder like a normal human 🙄 I fight it every time and every time I win. One day I won't win it will eventually take over, there is no cure.

I don't always look sick but inside I feel like I'm dying sometimes.

The one thing I want from sharing my journey with people is awareness and understanding.

Just because someone looks ok doesn't mean they are.

If I stumble, it's not because im drunk, it's because my brain is mushy and my balance is off today.

If I stutter it's not because I'm drunk, it's because my brain is mushy and my words can't get out.

MS sux but millions of warriors across the world fight it each and every day and every one of them is a hero 🧡

For now my journey continues 🙂

09/04/2022

28/03/2022

Right?! 🤣

24/03/2022

What is this beautiful weather were having here in Kent 😎☀️

Not complaining, I'm loving it!

I'm feeling so much stronger, despite having a small epileptic seizure the other night 🙄 I don't remember a thing, but my partner was with me.
I'm ok just felt a bit stiff, sore and confused afterwards.
Does anyone else have epilepsy alongside their MS?

My legs are almost back to their normal selves 🙌 so I'm definitely coming out the other side of this relapse ❤️

Speaking to the neuro again on Monday and can't wait to tell him the news!

Still waiting for the MRI to see what's happening inside but otherwise everything is great ☺️

How are you guys doing?

Let me know in the comments below 👇😘

21/03/2022

Another beautiful day ☀️

Feeling stronger again today, decided to give the golden oldies tail a wash 🐎❤️

I think the new pain relief is working well 🙌

This is my medicine, this horse right here is my life saver, he's kept me safe and sane through everything my MS has thrown at me, he's 1 in a million, would you believe he's almost 26 years young ❤️

20/03/2022

The last 4 weeks have been a challenge, the steroids didn't work, hospital was a drama and the relapse just doesn't want to go away quickly....but today I had a breakthrough and I'm super proud 😊

This morning I ditched the walking stick, possibly a little bit too early, it was in my way 😆 I managed to re-fence an entire duck enclosure 🦆 (pictured) with help from my wonderful Wes and I even put on my brave girl pants and cycled home from the farm 🚴‍♀️

I'm very stubborn, I don't take kindly to my ms giving me problems, my legs in particular!

I'm still wobbly, I'm still a bit numb but I'm well on the way to recovery!

I think I'm ready to take the horse out this week in the beautiful sunshine 🏇☀️

No matter what this monster throws at me I will fight back 💪 it chose the wrong girl to pick on 💅

17/03/2022

Yesterday was a positive visit with the neurologist 😁

Waiting for an MRI but we think this relapse will pass

Feeling alot better for seeing someone

He's furious with the a&e staff 🥱

15/03/2022

Who has a good support network? Who doesn't? Who's lost friends/partners over the years?

I've lost alot of friends thanks to my MS, they don't understand it and they never will, some don't even try, they can't accept it when I cancel plans last minute or when I um and arr about something because I'm not sure I'm up to it..

I'm used to it now but it still hurts, people think I'm miserable, I have a resting b**** face 90% of the time but I'm not grumpy, I'm usually in alot of pain, more pain than the average person could imagine, so I may not be happy and smiling but it doesn't mean I'm miserable 😏

I'm judged alot, I'm used to it but it hurts when it's done by those close to me.

That's one of the reasons for this page, to raise awareness of what us MSers go through, it affects so much more than people see

Let me know in the comments what you've experienced and how you deal with it 👇😘

14/03/2022

Those of you following my latest little relapse, this is the story so far regarding my medical team.

Last week when I finished the steroids my legs were still bad, so the neuro said he wanted me in hospital immediately, no bed was available in the ward so he told me to go to a&e and get admitted that way, I sat in a&e all night long on Friday, with my hospital bag, told them everything including what the neuro wanted, they left me without pain relief, the doctor that saw me really didn't have a clue what to do with me, he asked me what usually happens when I relapse so I told him, he gave me a low dose (too low) of steroids and sent me packing 🙄 today (Monday) I've called my MS team to let them know what's happened and so far I've heard nothing back, my particular MS nurse is off until Friday and it seems the others aren't interested. I'm absolutely fed up. I feel dreadful and my legs just aren't getting any better, I'm struggling to get through my daily activities without any help from the medical team at all! No stronger pain relief... nothing! I'm alright in myself, I always am, I'm just frustrated! They say it's urgent, yet they're not very quick on the uptake 🙄 here's hoping I'll get a call soon 🤞 in the meantime I'm enjoying the sunshine and spending time with my precious animals 🤗

13/03/2022

Not feeling my best today but after a slow start to the day I managed to have a spring clean at the stables, sorted all the Animal enclosures and had lots of cuddles with the baby bunnies ❤️ not sure where the energy came from but it's most welcome!
I wobbled around most of the day but I did it 💪
Not even a relapse will stop me caring for my beautiful animals, they really are my medicine!

Show me your fur babies that keep you going 🐎🐖

13/03/2022

Christmas Eve 2012 changed my life forever.

I got the call I was dreading, confirmation that I did in fact have the monster that is MS. 🙄 Merry Christmas to me 😏

I was 25, scared and thought my life was over.
I was wrong! I turned into a vegetable at home for 6 months, felt sorry for myself, wanted pitty, didn't want to even try to go about my everyday life...then one day sat in the Neuros office, listening to him tell me perhaps I shouldn't ride my horse anymore 🤔 something inside me switched, the competitive, stubborn mare within me wanted to hit back.

I sourced another horse 🐎😂 and said a massive "up yours" to my disease and decided I was going to fight it with every little part of me.

I don't allow my disease to stop me doing anything, sometimes I have to do things differently to others but I'll still do it!

Fast forward to 2022 and I'm completely at peace with my monster. It's a part of me now that I can't change, but...it's not who I am! It will not define me 💯

Don't give up warriors 🧡 keep fighting the good fight 💪

11/03/2022

Hospital bag essentials for MSers 👇

* Sweets to counteract the taste in your mouth from hospital food 🤢

*Ni****ne if your a yucky addict like me

* Lucozade ..just because

* Horse & hound magazine for my animal fix

*Biscoff cream biscuits 🤣🤣

I suppose some clothes and toiletries too if there's any room left 🤫🤭😝🤣

11/03/2022

Facts

11/03/2022

Recently I'm encountering a number of newly diagnosed or people that are really struggling, I then watch others give them advice, sometimes very disheartening advice and full of sorro.

We are all on a journey, a 💩 one but it's a journey none the less. I'm a firm believer in mind over matter, positive thinking is key, I know that's easier said than done on days when the monster is pushing us to our limits, but life isn't over for us because we have MS! We learn to embrace it, we learn who we are all over again.

Life is literally what we make it, we cannot change our disease, we can only hope for a cure one day.

The one thing that I found a huge positive in this journey was meeting others with MS, some have become my life long friends.

We are all one big family and here to support each other.

If anyone is ever feeling down this inbox is open.

I've lived with MS for 10 years now, it's given me one Hella ride 🙄 but I still fight, I still love life because it's precious.

You are all warriors 🧡 MS was given to the brave 💯

09/03/2022

So MS does change within hours, minutes, whenever it chooses 🙄 yesterday I finished the steroids, felt good, woke up today not so great, as the day has gone on my pins and needles are back in my arms and legs and I feel dreadful 😑 I'll be back on the phone to the ms nurse first thing tomorrow! Looks like this relapse hasn't quite gone, I'll keep y'all updated with this little journey of mine ✌️🧡

09/03/2022

So steroids are over for now, not feeling 💯 🙄 woke up feeling very sick and had an awful migraine, can't get this disgusting metal taste out of my mouth either 😬 how I love the side effects of meds 😆 keep on pushing on warriors, we got this 🧡

08/03/2022

Day 5 of steroids complete 🙌 I'm fat and I'm lacking sleep but my relapse has subsided! That's what's matters, back to feeling like me again 😁

05/03/2022

04/03/2022

I start steroids today for this latest relapse ✌️ I'll document the next few days to see what, if any, improvement there is 🙌

Send all your positive healing vibes this way 😘

28/02/2022

This is my tremor, not sure how much of it you can see on the camera, but it's extreme in the morning excuse my PJs and face 🤣 it was only 7am. This is the reality of my ms. I will start recording more of my symptoms to raise awareness of what this disease can do

27/02/2022

Please feel free to join one of our awesome support groups 👇
MS SuX & MS I Am Boss.

27/02/2022

Well the last few days have been challenging, I felt my right leg slowly giving up on me, started with a little tremor in my arms to now a full blown tremor in my arms, neck and head. 🙄
The worst part of it is I resemble an alcoholic 🙈 shaking in the shop first thing, everyone staring at me 😂

I'm also back on my granny stick 😏

I hope this relapse goes away soon it's getting boring and the sympathy is too much to bare, I'm fine people, just got a stick and I'm doing the shakey shakey.. nothing to see here ✌️🙈

26/02/2022

Hey warriors 🧡 please feel free to inbox me with any questions or concerns you may have, recently I've received alot of messages from people waiting on a diagnosis, I love helping people, I'm not an expert but I've lived with this disease long enough to know what it can do to us physically and mentally and I want you all to know I'm here for you 😘

Have a great day wherever you are in the world

24/02/2022

What gets you out of bed everyday? What do you look forward to? For me it's my animals, they give me a reason to fight MS ❤️

23/02/2022

How did you wake up this morning?

My right arm is frozen and my legs are like jelly, I resemble a womble this morning 😏

The joys of being an MSer 😆 even the cats laughing at me 🐈

20/02/2022

How long have you had MS? Did it take long to get a diagnosis?

I had a stroke being born and they think, maybe that triggered it, there's no telling for sure but I've had symptoms most of my life and was diagnosed 10 years ago! I'm 34 now but feel 94 🤣

20/02/2022

Woken up to very wobbly legs today 🙄 all the stress over the weekend got me jigging.

Anyone else have these silly leg tremors?

Aren't us MSers blessed 🙄😂

11/02/2022

You think I have it easy huh? 😂 So I only have a small home to look after, and only two people to cook for and clean up behind, sure I'm lucky 🙄 so lucky that I get out of bed each Morning, more tired than when I got into it the night before, I have constant severe pain in my back and legs, but I look ok? I look ok because I don't mention it, I won't dare let the world see what my disease is doing to my body, I struggle to even get myself dressed but you wouldn't know it. I look after my beautiful animals, which isn't easy and mostly I do this alone, in pain, and my body drags itself from job to job, I also try to take care of my mother, her home and her medical care all the while struggling to remember one minute from the next, this in itself is destroying me, watching a second parent disappear to dementia, my brain gets so full up that it crashes and I don't know what I'm doing next. It sends me into a severe panic, I get stressed which in turn triggers my MS. My legs don't want to work properly, I fight for each step I take. The simple task of making a coffee in the morning is 5x harder than it should be. I'm growing tired of explaining myself to those around me, if you don't get it you never will. Stop comparing yourself to me, we are NOT the same. Life isn't easy for anyone, then add a debilitating disease into the mix.

Educate yourselves

11/02/2022

Today I learned of a lady, in Australia that was turned down by the police for having MS! Despite her showing very clear medical evidence that she could do the job. 😡

Have any of y'all found yourself in a situation like this? How did you handle it?

11/02/2022

Who struggles with weakness? Who would like to try and be a bit more active?

Who fancies learning some armchair workouts? No standing, no straining your bodies, just strength and conditioning for your arms?
Hit the ❤️ If your game

10/02/2022

Keep inviting your friends 👏 help me grow the page ☺️

09/02/2022

Please keep inviting your friends ❤️

09/02/2022

When did your journey start?
Do you remember your diagnosis?
I was diagnosed Christmas 2012, I remember it to this day, the day my life changed forever

Have you seen a change in your bodies since being diagnosed?

Share your story 👇

08/02/2022

People think I'm lazy 🙄 sometimes my house and stables are messy, do I care? Yes! Can I help it? No! People don't see the exhaustion inside of us. To the "normal" person we "look ok" inside we're fighting for just the smallest burst of energy to get through the day.

07/02/2022

One of my pet p**ves, people thinking MS is just a physical disease, not understanding the psychological affect it has on us too

I personally have many issues

Clinical depression ✔️
Sonophobia ✔️
Memory loss ✔️
Uncontrollable emotions ✔️
Brain fog ✔️
Anxiety ✔️
Racing thoughts ✔️
To name but a few 🙄

What's your worst symptom that people don't understand?

06/02/2022

Right!? 🤣