Tag: Chronic Fatigue

Day 2 Low Dose steroids *blog #2*

So after the 3 hours cat-napping I had last night I’ve actually had a really good day!
I certainly didn’t expect to feel as awake as I have, which is saying something as I’ve felt as though at some point during the early hours I felt as though I was thwacked across the head with a baseball bat! A bit melodramatic?
Welcome to the world of the MegaSpecial on Prednisone  steroids where ANY thing goes! Buckle in, it’s gonna be a bumpy ride.

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It’s been our normalish Sunday,  we took Ollie our 12 year female Labrador with hip dysplasia to her regular hydrotherapy, then lunch at The Weavers Arms and home for a film. Special thanks to Shelley & Deb for twisting my arm (Shelley mostly) making me indulge in a warm chocolate fudge cake and icecream for desert at The Weavers! A special treat, not that I have it often! What!? Shhh!

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Oh wait, I missed the most important thing out… Sunday morning at the gym, well that’s because I didn’t go! Resting my body and all that! I have to remember to be kind to myself whilst I’m on these steroids for a possible MS relapse.

Did I forget to say anything else about today? Of course, my bright red cherry tomatoe hamster pouch steroid face! My check bones have nearly vanished (again) & I look like I’ve done one of Kate Kings hour long fast paced Pilates classes! I wish! But I’m used to this flushed look now so I can handle it.

I’ve been doing so well on my diet, so people keep reminding me! I’m one of those that ‘can surely always do better despite my Chronic illness!’ right? I need to stop being so hard on myself! Two stone lighter and then I go and have to take a course of Prednisone steroids which have to be one of the worst drugs for weight gain that I know! Oh yeah, there is that other drug that I was made to eat earlier! The drug of Chocolate cake, that is surely as bad as steroids! No? Worse? Really! Woops!

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I think I’ll wrap it up there! I’m pleased with how my 2 days have been so far, no real improvement with the suspected relapse but like I say it’s only day 2!

Another very late night, I hope this insomnia doesn’t last too long. It’s a horrible thing insomnia! A very lonely time indeed when only a handful of my friends that ‘get me’ are still awake! ‘The spoonies’ as we tend to get called! These aren’t just people that have MS, these are friends that have different Chronic illnesses.

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megaspecial.co.uk

The blogger that can’t write, the artist that can’t create & the Pilates advocate that can’t practice

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This is where I am now but I can’t walk well and definitely show the pain!

I’m quiet because it hurts. Everywhere hurts so much, it’s a pain like no other and nothing stops it completely.
My mood is the lowest it has been in a long time, it’s expected when I’m struggling to manage my pain.

Normally I would be using exercise to help with my pain but I’m having to take some time off that.
I started to experience funny sensations in my feet which, over 2 weeks have crept up both of my legs.
Around the same time this happened I found my legs were getting weaker, I have now adapted my walking ‘gait’ to suit how my legs feel. My feet are now wider apart for stability & my legs although weak are also a lot like I imagine wooden legs to be, stiff!

So after speaking with my Neurological Physiotherapist I have been advised not to exercise at the gym & no pilates classes for a while.
It’s time to give my body a rest & not make it harder for it to recover. It seems more & more likely that this is a relapse!
Like my Big Sistaaah of the MegaSpecial variety says: just when we get our lives back on track our MS flares up & reminds us it’s still there!

The 'Foot ups'
The ‘Foot ups’

I have to wear my ‘foot ups’ full time now as well, even in doors! They help me to lift my toes when I walk, this problem that I am having is called ‘Dropped foot’

Foot drop

Foot drop, or dropped foot, is a symptom experienced by some people with multiple sclerosis. It is caused by weakness in the ankle that means the foot drags along the ground or hangs down when walking. People with MS with foot drop are more vulnerable to tripping and falling. Walking also uses more energy and people may alter their gait to compensate, commonly lifting their leg higher.

Foot drop can be treated using functional electrical stimulation (FES). This uses small electrical charges to force the foot into a more natural position for walking. An ankle splint (orthosis) can also be used to hold the foot in a rigid position.

These are the days that are the longest! I can’t exercise, blogging is extremely hard as I’m lacking concentration & can’t do my art without falling asleep!
It’s a good job my artwork is digital otherwise I’d be waking up with paint all over my face! Instead I just wake up with ‘qwerty’ across my forehead!

I’m the blogger that can’t write, the artist that can’t create & the Pilates advocate that can’t practice.

*It has taken me literally all day to do this short blog!*

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#invisibleillness #iiwk15 #invisiblefight

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I haven’t posted anything on my blog for a while, for those that follow it I am not giving in with it.
I am having a little confidence knock which I believe to be a part of my anxiety/depression & my MS.

It is becoming increasingly harder for me to cope with a lot of technology and so I am trying to have a cut back & a ‘low tech’ time!
This is proof that even us happy, cheery people aren’t always what they seem on the outside!

This is my #invisiblefight to get me back!

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megaspecial.me
megaspecial.co.uk

MS-UK fundraising blog

Take a look at @MSUK6’s Tweet: https://twitter.com/MSUK6/status/647043872938442752?s=09

Another plug from Anna, MS-UK’s fundraising administrator.

She also mentions Shelley’s family fun day that was held at the Weavers Arms, Fillongley last weekend. I shall be sharing picture’s from this wonderful day very soon!

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megaspecial.co.uk

Happy funtastic Friday peeps!

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Happy funtastic Friday peeps! This is where it begins!

TODAY
•Back to basics Pilates class with Kate King = Love!
•Collecting MegaSpecial Sistaaah Sarah Hickman & nephew Lewis from train station = More love
•Rugby World Cup starts = Happy
•England v Fiji = Adrenalin

TOMORROW
•Shelley’s family fun day at The Weavers Arms, Fillongley in aid of MS-UK = FUN
•Me in the stocks at the event = Arghhhh
•A group of MegaSpecials (MSrs) all meeting together at event = Amazing & dream come true!
•Adam’s 35th birthday party in evening = Shattered me, Sare & Sista Rosemary plus more fun!

SUNDAY
•Recover! 😜

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megaspecial.me
megaspecial.co.uk

MS-UK | Fundraiser of the month

Have u ever heard that saying, ‘proud as punch’ well that’s how u feel right now!

Proud of all my friends that made up team BAM4MSUK because we have been chosen as fundraiser of the month for doing so well in the ‘Color Run’
http://www.ms-uk.org/fotm
I know it says my name but it was a team effort! We did it guys! Same next year!?

Click on the link to read my story & stay tuned as I’ll be sharing more about it soon! 😄 🌈

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megaspecial.me
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Vix, the bird whisperer

It appears I may have a talent for saving birds!
Another one flew into the window here at Fugly Manor Nature Reserve, big explosion of feathers as usual & a tiny young Gold Finch hits the decking, neck twisted round!

I thought she/he was a gonna (for this posts sake bird is a she!)
When I bent down to her, she was still breathing and she blinked her tiny little eyes at me! Her neck was still twisted round so I was holding much hope. I very gently lifted her a cupped her in my hand, she just kept blinking looking & at me. I managed to find a shoe box, put some holes in so she wouldn’t suffocate, some kitchen roll and lay her in it.

I was due to go to my MS exercise class but wasn’t quite sure what to do with this precious little creature. I decided the best thing would be to keep her in the box and put it in the shed whilst I was out!

As soon as I got back, that little bird was on my mind! What will I find when I open the box? I wasn’t expecting it to be good news.
I opened the shed door, very gently I lifted the box and stepped out of the shed. If it was ok, the last thing I would want to happen is for it to be loose & flying around the shed!
I took a breath and opened the lid, nothing apart from some feathers & bird poop! No bird! Well I guess it’s ok then and maybe I cut that hole to large! I was shocked that it got through the hole!
Whilst being in shock that the bird was gone I then realised I needed to find it! It was in the shed somewhere! Oh gawd!
I looked around the window area, knowing that it would have been attracted to the light. Bingo! I could hear it, it was trapped between the wall of the shed & some wood. I managed to pull the wood out of the way & out flew the little young Gold Finch!
She flew onto the larger shed opposite, stopped to catch it’s breath and figure out what had happened and then flew away!

Yey! I saved another casualty of the window!

I feel so happy! 😄

megaspecial.me
megaspecial.co.uk

Rediscovering a MegaSpecial me

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Oh my days! This was my post, this day FOUR years ago! Counting down to the firewalk fundraiser we organised for the MS Trust!
I never thought that night would have such a massive hit! All I wanted to do was prove to myself ‘if I can walk on fire then I can be stronger than MS’

I didn’t realise then what an amazing journey I was about to go on in rediscovering myself!
It’s taken along time but I think I’m finally at a place in my life that seemed so unreachable so many times!

I know there will be difficult times ahead, this is my life & I have MS! I’m in such a better head space now than I ever was before! As long as I stay this way, this focused then I hope I can handle anything thrown my way!

megaspecial.me
megaspecial.co.uk