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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Call me crazy but I love suffering the day after a workout

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I’m back!

Tuesday was my first day back to the workout I love so much, the one I am most passionate about, Pilates*

*Pilates aims to strengthen the body in an even way, with particular emphasis on core strength to improve general fitness and wellbeing.

6 weeks is a long time!

It has been 6 weeks since I noticed my legs were much weaker than normal, since I went numb from my torso down to my feet, since my balance disappeared and I started walking with my feet wider apart making it a little easier to stay upright.

Steroids

It has been 4 weeks since I saw my GP and was prescribed Steroids for a possible relapse!

The neurologist that I have no faith in!

It has been 3 weeks since I had an appointment with the Neurologist that was so rude to me and made me cry! The Neurologist that told me I’ll be feeling better in the spring, that I don’t have Drop Foot even though my Neuro Physiotherapist referred me to be assessed for FES (Functional electrical stimulation *FES* is a treatment that uses the application of small electrical charges to improve mobility. It is particularly used as a treatment for foot drop.) He told me I don’t need the ‘Foot-ups’ or also known as ‘ankle splints’ that my Neuro Physio gave me. I have been told to use these on both legs all the time to help with my ‘drop foot’, because if I don’t I trip and fall! Yeah, I’m to throw those in the bin! And he said I don’t need the 2 crutches I was using that day (because the steroids I was taking make me feel weak!) His reply was that steroids don’t make you weak they make you strong and that is why athletes take them!

Now I understand that not everyone will know this but, from experience of taking steroids and understanding them in great detail I am aware that there are different types of ‘steroids’ and they are used for different things!

  • Corticosteroids – a class of drugs used to treat relapses in Multiple Sclerosis and many other conditions
  • Anabolic steroids – abused by some athletes and others to enhance performance.
    Anabolic steroids are synthetic substances related to the male sex hormones (androgens). They promote growth of skeletal muscle (anabolic effect) and the development of male sexual characteristics (androgenic effects).

It doesn’t take a degree to work out which ones are taken by athletes to make them perform better!

Looking at the huge list of side effects that come with Corticosteroids (the type of steroids I was prescribed by my GP) Methylprednisolone in particular, you will notice it states that Muscle weakness is one of them!

All that information on Steroids is found here What is the difference between Corticosteroids and Anabolic steroids?

Relapse or flare up?

I was told that I didn’t have a relapse which is fantastic news! If I had then they would have taken me off my monthly drug ‘Tysabri’ that helps to stop relapses. I’m so grateful that my MS team are happy for me to stay on Tysabri! I’ve been on it for 3 years now and in that time this last ‘flare up’ has been the closest I’ve felt to relapsing. Before Tysabri I was relapsing every month so I’d rather stay on it!

Back to my workout

There’s always a first for everything! For the first time I actually gave myself time to recover from my flare up, I didn’t go to a Pilates class until I felt completely ready! I didn’t think it would be as long as six weeks though! Another first is that I am taking it steady as well, I’m not going to over do it because my body isn’t what it used to be. It’s the only one I have and I need to take care of it!

Tuesday was my first day back to a Pilates class, it was so much harder than I remember which is proof that I do need to take it steady. It was amazing and yet frustrating at the same time. One thing that isn’t a first for me is ‘beating my self up’ I get so annoyed with myself when I can’t do all the stretches properly. The new Pilates instructor Lisa Perry  kept telling me how well I was doing. I took the compliment and had a little chat with  myself, I have nothing to prove to anyone, not even myself! For someone of my limited mobility I’m doing pretty amazing! That feeling after when my muscles had woken up was brilliant. Lisa’s classes are such good fun. The stretches she teaches are great, I’m sure she adds in a few Yoga posses which are hard but feel incredible! I’d like to learn Yoga but definitely one thing at a time!

Yesterday was my second time back at Pilates, a different type of class with Hannah Bailey. Fantastic! Hannah’s energy is amazing, she puts every ounce of it into her classes and really pushes you to reach your ultimate! Her classes are fast, she qualified to teach PiYo* earlier this year, I’m sure she is throwing in a few PiYo exercises into the Pilates class. If she is then I’m up for it but I must take it steady!

*PiYo combines the muscle-sculpting, core-firming benefits of Pilates with the strength and flexibility advantages of yoga. Piyo cranks up the speed to deliver a true fat-burning, low-impact workout that leaves your body looking long, lean, and incredibly defined.

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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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SUPRISE!

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 🎉

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My MegaSpecial Sistaaah Sare & her husband AndyRoo!

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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Me & my big sister


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You know Vix has had steroids when this comes out!

Having a very sensitive stomach means that I react badly to steroids.
I already take Omeprazole as a regular medication, this is a drug that is prescribed to protect the stomach. The amount that I take is double what is given to most Multiple sclerosis patients on steroids so I don’t get to have more when it’s my turn for the nasty S word!

I took my last steroids on Tuesday which was 4 days ago and yet it isn’t until now that I am really starting to feel the effects they have had on my stomach!
I have felt ‘unwell’ from these steroids since the 2nd day that I took them (6 days ago)
I remember every time I have steroids on around day 7 (now) the reason I say never again! But why do I always give in and still take them! Because it’s in the medical profession that we rely on, we put our trust in them that they are doing the correct thing for US!

Knowing right now that I took these latest steroids for no reason makes me angry!
When I was seen by the Neurologist on Wednesday he confirmed that in fact I am not having a relapse which is great news, but I was prescribed steroids by my GP and for no reason!

I am left quite literally with a bitter taste in my mouth because of this! Had the MS nurse returned my call sooner than the 3 weeks it took them maybe just maybe I wouldn’t have been prescribed the Steroids!

This now leaves me wondering, what is happening to our MS nurses?

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‘Remember A Charity’

Thanks to the MS Trust​ for nominating me to ‘Remember A Charity’ as a guest blogger to blog for their website about the importance of helping a charity in your will.
Writing this was a welcome distraction from the horrible side effects of the latest steroids my GP prescribed for me!

http://www.rememberacharity.org.uk/why-i-chose-to-remember-a-charity-in-my-will/#.ViEFZZkrLLY.facebook