Multiple Sclerosis fact #5, vision problems

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Needle point, one of my favourite things to do!
Threading A needle is fun when there’s TWO of them (thank you double vision)

Sewing a seam is joyous when you need the cloth and the thread to be identical in colour. This means with my MS vision I can’t tell where I have sewn and where I need to sew (thank you loss of contrast)

It’s no wonder I always end up with a pile of items waiting to be repaired!
When something joyful becomes dreadful!

40 minutes later and I’m still trying to thread the needle!

Obviously the danger is this, having a disease that drains my energy so rapidly means that I do tend to fall asleep at the drop of a hat! This always happens if I’m stationary for a long time. If you weren’t aware, sewing requires you to sit on the same place for a certain amount of time. It really wouldn’t take much for me to nod off & poke myself in the eye with the needle!

Thats why we’re MegaSpecial! Because we do really silly things, the great thing is, we train ourselves to laugh at the silly things! It gets us through!


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I’m cold, it hurts if I get too hot but can’t feel heat to touch!

Gotta love my Debbie for switching the electric blanket on last night for when I went to bed!

Gotta hate my MS for me not even realising it was on (I couldn’t feel the difference in temperature!)

I’d done myself a hot water bottle as well & took it to bed with me warming my back to ease the pain!

Oh my days! Can u imagine!

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Can I learn a new skill?

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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Brrrrr! It’s a little chilly!

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!

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Me (right) and my MegaSpecial Sistaaah Sare (left) in Cyprys

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!

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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!


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MS is my Kryptonite & I am Supergirl!

Pilates is my happy hour!

So true!
For the time I’m in a pilates class I am that focused I am able to exercise through the pain!
Stretch it out!

My pain is so bad again!
Roll on pain clinic 4th January! Fingers crossed for a cancellation because I don’t know how I’ll manage with this pain just getting worse!

It’s hard to stay positive when your in pain but I try my best!

MS is my Kryptonite & I am Supergirl!

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Pain, sleep & running late

Today has been about Pain, sleep & running late!

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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!

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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!

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“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!

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What’s in a hug?

General hug

—verb (used with object), hugged, hug·ging.

to clasp tightly in the arms, especially with affection; embrace.
to cling firmly or fondly to; cherish: to hug an opinion.
to keep close to, as in sailing, walking, or in moving along or alongside of: to hug the shore; to hug the road.
—verb (used without object), hugged, hug·ging.

to cling together; lie close.
—noun

a tight clasp with the arms; embrace.
Origin: 1560–70; perhaps < Old Norse hugga to soothe, console; akin to Old English hogian to care for

A hug is an international form of physical intimacy in which two people put their arms around the neck, back, or waist of one another and hold each other closely. If more than two persons are involved, this is informally referred to as a group hug.

A hug, sometimes in association with a kiss, is a form of nonverbal communication. Depending on culture, context and relationship, a hug can indicate familiarity,love, affection, friendship, brotherhood or sympathy. A hug can indicate support, comfort, and consolation, particularly where words are insufficient. A hug usually demonstrates affection and emotional warmth, sometimes arising from joy or happiness when reunited with someone or seeing someone absent after a long time. A non-reciprocal hug may demonstrate a relational problem. A hug can range from a brief one second squeeze, with the arms not fully around the partner, to an extended holding. The length of a hug in any situation is socially and culturally determined. In the case of lovers, and occasionally others, the hips may also be pressed together.

MS Hug

A tight feeling, usually around your chest but sometimes around your hand, foot or head. It may feel so tight around the chest that you feel like it’s a bit difficult to breathe. Sometimes, it can squeeze you really hard and not let go in a hurry.

The MS hug is quite a common symptom of MS but is not well known, especially to people who have just been diagnosed. It’s probably worth being aware of the possibility so that you are not taken by surprise if this symptom happens to you. It is also known as banding or girdling.

The science bit

There may be a couple of different things going on here depending on what you are experiencing. The feeling of tightness around your chest can be due to spasms in the intercostal muscles between your ribs. Some people also get feelings of aching, stabbing, crawling or pins and needles. This is a kind of dysaesthesia (meaning “not normal sensation”) and is classed, medically, as a kind of pain. As with most things in MS, it’s all due to nerve damage.

What can I do?

So what should you do if you get a band of tightness around your chest? First, think whether is it definitely due to your MS? Any chest pain has to be taken seriously just in case it has a cause that needs immediate medical attention like heart problems. Get checked out ASAP.

Secondly, relax and breath. This is easy to say but sometimes hard to do if you are being squeezed round the chest! However, it’s worth trying as being tensed up won’t help. Also, the symptoms usually pass without treatment so try and sit it out as comfortably as possible.

Some people find that a warm bath or heat pad helps. Drug treatments are available if the hug is really persistent, including those often used for other forms of dysaesthesia.

Wear a hat!

I’m not joking. Many people say that the best way to deal with the MS hug is to distract the brain from puzzling over the feeling of tightness. Although you can’t get rid of the tight feeling, giving the brain a good reason for the feeling can stop it focussing on the odd sensation and worrying about it. So, if it’s your head that has the MS hug, wear a hat! If it’s your chest, you could wear a close fitting top. Gloves, socks or boots may help with tight feelings in the hands or feet. However, some people say that wearing really loose clothing is better – give it a try and find out what’s best for you.

MS hug information taken from
https://www.mstrust.org.uk/news/views-and-comments/what-ms-hug

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You know you have a chronic illness when:

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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!


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I’m ok #iamfine #pain #MS #chronicpain

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I know the feeling but it’s so much easier to say your ok than to create pain for someone that loves you when they find out how much your hurting!


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