Arghhhh! I’m so frustrated!
Learning new skills when you have MS is like trying to ride a bike backwards!
You need patience of a saint and do not cry when you fall off! Just pick the bike up and away you go again!
No one said it would be easy!
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Today I went to an exercise class purely for people that have MS. This class is funded and run by the MS Society at my local Leisure Centre. It’s on twice a month and I go to it whenever I possibly can.
I’ve been going to these classes on and off since the summer. They are challenging, tiring and great fun!
The class is taught by Laura, a wonderful fitness instructor I know from a class called ‘Forever fit’. This class is for seniors and is on after the Pilates class I attend on a Wednesday.
All of the exercises in the MS class are done whilst sitting down, which means that everyone can take part, no one is excluded from these classes!
Who’d have thought marching your legs and lifting light weights with opposite arms at the same time would be so confusing!
Who’d have thought lifting your legs whilst tapping your feet forwards, centre, back, opposite leg and repeat would be so confusing!
It’s like patting your head with one hand and rubbing your tummy with the other! The brain has to do two things at the same time with both hands, you have to really concentrate.
So let’s now imagine everyone in the room is tapping the floor with their feet at the same time, great!
But then…
What, what, someone is out of time! Now I’m getting confused because the beat is changing. It was then that I realised the lady wasn’t tapping out of time but her right leg had started to tremor and was tapping uncontrollably. Now everyone had lost their concentration, we all started to laugh as the lady with the tremor tried to control it!
It’s moments like those that are priceless, when a group of people all with the same debilitating disease can laugh at it. When we see the funny side to our ‘uniquely different’ debilitating disease!
This is where my other saying for ‘MS’ comes from, ‘ManySmiles’
If you know anyone with MS (if you have MS yourself you’ll ‘get this’), take notice next time you are in the company of these wonderfully MegaSpecial people. See how much they smile! Hear how much they laugh! Then notice that it’s normally at ourselves!
I had a lovely card off one of the ladies at the exercise class today, unfortunately it’s in the car and with the temperature somewhere near 0°c I’ll leave it there and share it with you tomorrow! All I’ll say is, it’s beautiful! Its so lovely that I needed to hug her directly after reading it!
That was my workout done for the day!
Deb got home from work at 17:45 had a cup of tea and went off to the gym! What a difference in us both!
1: We now exercise regularly
2: We eat healthily
3: I only did one work out today!
Yep! What a difference! I hung up my Wonderwoman suit! I said to myself (and Deb of course) when we got back from our lovely holiday that it was definitely time for me to apply the brakes, so that is exactly what I have been doing! And I feel proud for doing it! I hurt more because the hormones released when exercising help me manage my pain but, I feel proud!
megaspecial.co.uk
Always a reason to smile! Happy Monday folks!
megaspecial.co.uk
If there’s one thing I can guarantee with my MS, it hates the slightest change in temperature! Anything between 18.5°C & 20.5°C is fine but lower or gawd forbid higher then there’s trouble!
2 years ago I went to visit my Mum in Cyprus with my MegaSpecial Sistaaah Sarah (from another mista, aka my best friend!) Her MS just adores dry heat and my is it hot in Cyprus! Unfortunately I spent most of the holiday in so much pain! Luckily I had my Mummy and DdyPaul looking after me whilst my MegaSpecial Sistaaah Sare was keeping me busy with laughter!
Despite the pain I still had a wonderful holiday!
On the other scale is days like today when the temperature really starts to plummet and winter sets in! Nights like this when I have to increase my ‘Pregabalin’ (nerve pain meds) to help me with my pain through the night!
I’m not sure which is the worst? The pain in the winter when my Spasticity in my legs, arms and hands is worse or the pain in the Summer when my MS Fatigue is worse!
megaspecial.co.uk
Yes I set 3 alarms to wake me for the gym!
Yes I cancelled all 3 alarms when they went off this morning, I didn’t even select snooze!
Yes I slept until 9am!
NO I didn’t go to the gym!
No I’m not annoyed with myself!
No I can’t still go to the gym. Oldest dog, ‘Princess Olivia’ has hydrotherapy at 11 & then doors to gloss
This is the first time I’ve been ok that I haven’t been to the gym!
Last week I only went to one Pilates class as well!
It’s ok to rest!
It’s ok to take it steady!
There’s no competition!
megaspecial.co.uk
I’m back! Alarms are set, if I wake up in time I’m off to the gym! If I don’t then I obviously need the sleep, it’s not quitting it’s being sensible!
megaspecial.co.uk
Today has been about Pain, sleep & running late!
I couldn’t keep my eyes open for long after breakfast, medicating and showering!
In fact, it was probably the showering that took all my energy!
I slept through mid morning meaning I missed my fruit & yoghurt, I slept through lunch as well though!
Good job I had my breakfast!
By the time I had woken I was pushing it to get to my pilates class on time!
I gathered my things, sent the instructor a quick message in case I didn’t make it to the class and made my way to the leisure centre.
I arrived at the leisure centre at 13:45!
15 minutes late! By the time I’d gotten into the centre and up to the room I was 20 minutes late! I stood outside the room where the class was taking place and stopped!
I turned around and took my things into the changing room to a locker.
I’d decided not to go into the class so late!
Instead I went into the gym and used the equipment in there!
Proud moment!
Not proud that I slept through the morning and was late for pilates, but proud that I still went to the gym & exercised!
Why did I sleep so much today?
Have you ever been in so much pain that it drains you?
Ever been in so much pain that it wears you down?
Pain doesn’t stop,
It wants to be felt,
I needs to be owned!
“Chuck it in the F*^°k it bucket and move on”
So my day hadn’t gone to plan, so what! It wasn’t the end of the world and I managed to get into the gym for some pain management!
That’s why I do it!
No over the shelf pain medication can help this pain I feel. I’m allergic to anything stronger!
That’s right, I can ‘take’ anything to ‘take’ my pain away!
1 and a half years ago however when my physiotherapist introduced me to the gym, I found a way to help ease that pain!
Okay, it isn’t for as long as the medication may work for but it’s drug free and it’s healthy for me!
megaspecial.co.uk
Time has a wonderful way of showing us what really matters!
Waste your time wisely!
One life, one chance!
megaspecial.co.uk
Everything about this is true!
Although it should also say…
— you feel like a normie when your with friends that also have Invisible illnesses!
— when with said friends you can guarantee at some point the conversation with turn to your bladder or bowel movements!
Don’t we live the high life hey!
megaspecial.co.uk
This is a great graphic to show how I am feeling today!
A shorter blog today as I’m not very focused on what I’m wanting to do. Concentrating is so hard when you have Methylprednisolone or Steroids pumping through your body! I feel like I’ve been in the wash on a fast spin and thrown in the tumble dryer to dry out!
Perhaps I would make an ideal member of the cast for ‘Walking dead’ becasue thats exactly how I feel! One because that is how my MS makes me feel and two because that is how Steroids make me feel! Double whammy
Tomorrow is my reschedualed appointmnet to see the nurse Neurologist. I was supposed to see my MS nurse today but becasue of my new MS symptoms she cancelled the appointment and booked me in to see one of the Neurologists tomorrow, I’m happy that she will be there as well as I have had issues with the Neurologist in the past!
For anyone to say they are looking forward to an appointment with the Neurologist would be speaking far from the truth! When ever I see this particular Neurologist I always worry ‘what if I can’t communicate how I am feeling properly’ that then leads me to thinking ‘what if I make no sense, will he think I’m a hypochondriac?’
I really dislike this man that I’m seeing tomorrow.
Now I’m starting to get palpitations which could easily be down to the steroids, it could also be because of the anxiety I’m feeling about this appointment tomorrow.
I really hope he doesn’t want me to have an extra day on the steroids which would take me up to the full treatment course. Well tomorrow will soon be here and I hope to have some answers!
The things I have learnt today (but may have already known before and had just forgotten)
1: Steroids are Soul destroying
2: Steroids make everything taste like the worst thing imaginable.
3: Every time my MS plays up like this I feel as though it takes a little bit of me away.
Living life the MegaSpecial way! 