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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However, its not just any Monday!
No, it’s drug day! *courtesy of the NHS*
So, every 28 days I go into hospital and sit hooked up to a machine! I’m there from the hours of 8am until anywhere between 11am & 1pm!
That’s right, tomorrow is day 28!
Thank goodness for the wonderful monoclonal antibody that affects the actions of the body’s immune system.
*Monoclonal antibodies are made to target and destroy only certain cells in the body. This may help to protect healthy cells from damage*
Thank goodness for this wonderful drug that keeps my relapses at bay and is helping me live as much of a normal life as is possible with Relapsing Remitting Secondary Progressive Multiple Sclerosis
*Secondary-progressive MS: People who get this type usually start with relapsing-remitting MS. Over time, symptoms stop coming and going and begin getting steadily worse. The change may happen shortly after MS symptoms appear, or it may take years or decades*
But I still have relapses, or at least I did until I started…
2.3 Natalizumab (Tysabri) is administered by intravenous infusion; the recommended dose is 300 mg every 28 days. Natalizumab costs £1130 per 300 mg vial (according to the manufacturer’s submission), so over a year the cost of the drug is approximately £14,730 per patient.
Multiple sclerosis – NICE
It’s not walk in the park but I’ m ready!
Bring on the drugs!
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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!
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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!
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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!
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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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Time has a wonderful way of showing us what really matters!
Waste your time wisely!
One life, one chance!
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I never thought I would say how much I can relate to a Disney character!
Bambi on ice & Sven from Frozen!
Having MS is never boring!
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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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Best suprise ever…
Deb shouting me from the bathroom ‘Vix quick, there’s a sparrow hawk in the garden’
In I stagger to see these two sitting on the sofa!
🎉 SUPRISE 🎉
My MegaSpecial Sistaaah Sare & her husband AndyRoo all the way from Yorkshire!
Andy was coming to this area to collect their son Lewis so Sare decided to come as well to suprise visit me & cheer me up!
Guess what, it worked! Having her around me always makes me feel ‘normal’ because she just ‘gets me’
The reason for that is because Sare also has MS and has had it for 17 years!
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Living life the MegaSpecial way! 