Tag: MS

Proud moment day!

Finally I feel like I’m joining earth again after my 2 month burn out!
I’m still not back to my ‘MegaSpecial’ standard but getting there.

I wasn’t just tired, I was exhausted which meant I found it so hard to ‘cope’ with my pain!
I haven’t been able to go to Pilates classes as much as I used to and, I can’t remember the last time I went into the gym!
I really miss the gym and how incredible it made me feel afterwards! I haven’t had that feeling when I’ve been to the gym for a long time. I guess because I was so low on my energy resources!

Well now it’s time to recoup them but in a balanced way, using exercise to help build my energy.

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This week has gotten off to a great start! Unlike last week I’m planning my days better and sticking to my plans!
Even though my pain in my back is gradually getting worse, making my cognition or Cog Fog incredibly bad I’m able to stick to appointment times now. I couldn’t even do that last week! I only made it to one Pilates class on time and that was because I didn’t go alone!

Yesterday’s Pilates was brilliant, just what I needed to help stretch out my back.
I spoke to the instructor ‘Lisa Perry’  before the class started and explained my problems with my back. She then adapted the class to suit the lower. .  back with nice stretches and exercises to strengthen it too. That’s what it needs, strength.

Today’s class was even better than yesterday, I felt totally focused and more in control of every muscle! I feel like I’m getting stronger again. Remembering how I felt nearly 2 months ago when I was taking steroids, I’m definitely on my way back!

I even managed to hold ‘Plank’ for a short time,  probably about 15 seconds which doesn’t sound much but have you tried it?

Plank

Plank, or front support in Pilates, is a well-known exercise. It is one of the most popular exercises for developing core strength and stability.

While Plank really targets the abdominals and shoulder stability, you will find that plank is an excellent way to get a full body challenge. In order to do Plank properly there must be integration of all the core stabilization muscles. The arms, glutes, and legs are active as well.

Plank can look like the up part of a regular push up. But, in most cases, a regular push up entails much more strain in the upper body — especially in the shoulders and neck — than plank in Pilates or yoga.

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Picture taken from Pinterest

I was more like the second from the bottom in the above picture, for the short time I held it & then I definitely looked like the one that says ‘FAIL’ even though it was more ‘success’ than fail!

Then we did ‘Downward dog’ which is practised in both Yoga and Pilates.

Downward dog

One of the most recognized yoga poses in the West, Downward-Facing Dog — Adho Mukha Svanasana (Ah-doh MOO-kuh shvan-AHS-uh-nuh) — is a standing pose and mild inversion that builds strength while stretching the whole body. It’s named after the way dogs naturally stretch their entire bodies! Downward-Facing Dog (also sometimes called “Downward Dog” or just “Down Dog”) is an essential component of Sun Salutations and is often done many times during a yoga class. It can be used as a transitional pose, a resting pose, and a strength-builder.

Benefits of Downward-Facing Dog

If you struggle with Down Dog, be compassionate and patient with yourself; you are not the first person with tight hamstrings or weak arms. On the other hand, be diligent. Ultimately, Down Dog will start to feel so good that you will really empathize with the full-body joy that dogs display while doing the pose.

Shiva Rea

Downward-Facing Dog energizes and rejuvenates the entire body. It deeply stretches your hamstrings, shoulders, calves, arches, hands, and spine while building strength in your arms, shoulders, and legs. Because your heart is higher than your head in this pose, it is considered a mild inversion (less strenuous than other inversions, such as Headstand) and holds all the benefits of inversions: Relief from headaches, insomnia, fatigue, and mild depression. The flow of blood to the brain also calms the nervous system, improves memory and concentration, and relieves stress.

Regular practice of this pose can improve digestion, relieve back pain, and help prevent osteoporosis. It is also known to be therapeutic for sinusitis, asthma, flat feet, and for the symptoms of menopause.

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Picture taken from Pinterest

Now I have only ever done ‘Downward dog’ once before in another of Lisa’s class so, I’m not 100% sure if I did it correct. All i know is that it felt really good and I got the thumbs up from Lisa so that’s all that matters!
Knowing Lisa, she would have corrected me if I was doing it incorrectly.

It was an excellent Pilates class today, my back felt good after which was wonderful!
I felt really proud of myself for doing so well!

When I got home I decided to treat myself to my old winter favourite, Galaxy frothy top – hot chocolate & decaf coffee! So yummy, I thought I deserved a treat! It may not be good for the waist but according to the recent news it would be good for my debilitating MS fatigue!

pixlr.jpgJust incase anyone missed the wonderful news about chocolate and MS fatigue… http://mssoc.uk/1NDk5BX

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I’m ok with that news!

Then to make the day even better in an odd way I declined going to the gym with Deb and our friend Adam! My reason, because I was just so awesome in my Pilates class that I needed to relax for the rest of the day and evening!
Such a shame I couldn’t go because I was really looking forward to lifting some weights with Adam! My thoughts, there’s no rush!

Plans for the rest of the week… dentist check up tomorrow! Eik!


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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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It’s no walk in the park

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However, its not just any Monday!
No, it’s drug day! *courtesy of the NHS*

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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!

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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…

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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

www.nice.org.uk

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It’s not walk in the park but I’ m ready!
Bring on the drugs!


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There’s no competition

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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It’s not quitting it’s being sensible!

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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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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