Category: Educate yourself in the world of MS

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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Day 5, the appointment with the Neurologist

MS is cruel, steroids are evil and I’m feeling fragile!

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I’m on my way to the appointment with the Neurologist to find out if this is an MS relapse or not.

Wish me luck!


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Day 4 of the steroids and hopefully the final day

FB_IMG_1444255162209This is a great graphic to show how I am feeling today!

A shorter blog today as I’m not very focused on what I’m wanting to do. Concentrating is so hard when you have Methylprednisolone or Steroids pumping through your body! I feel like I’ve been in the wash on a fast spin and thrown in the tumble dryer to dry out!

Perhaps I would make an ideal member of the cast for ‘Walking dead’ becasue thats exactly how I feel! One because that is how my MS makes me feel and two because that is how Steroids make me feel! Double whammy

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Tomorrow is my reschedualed appointmnet to see the nurse Neurologist. I was supposed to see my MS nurse today but becasue of my new MS symptoms she cancelled the appointment and booked me in to see one of the Neurologists tomorrow, I’m happy that she will be there as well as I have had issues with the Neurologist in the past!

For anyone to say they are looking forward to an appointment with the Neurologist would be speaking far from the truth! When ever I see this particular Neurologist I always worry ‘what if I can’t communicate how I am feeling properly’ that then leads me to thinking ‘what if I make no sense, will he think I’m a hypochondriac?’
I really dislike this man that I’m seeing tomorrow.

Now I’m starting to get palpitations which could easily be down to the steroids, it could also be because of the anxiety I’m feeling about this appointment tomorrow.

I really hope he doesn’t want me to have an extra day on the steroids which would take me up to the full treatment course. Well tomorrow will soon be here and I hope to have some answers!

The things I have learnt today (but may have already known before and had just forgotten)
1: Steroids are Soul destroying
2: Steroids make everything taste like the worst thing imaginable.
3: Every time my MS plays up like this I feel as though it takes a little bit of me away.

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Day 3 (Low dose) Steroids

‘Steroid day number 3’ out of my 4 day course given to me by my GP. My energy levels are not great, but that will be because I’ve not been sleeping great! Insomnia comes with steroids unfortunately! The first night in didn’t sleep until gone 4am, last night it was 2am! I wonder what time it’ll be tonight!

Fragile

Another thing that steroids do a great job of is messing with our moods! My moods are all over the place, now when I say ‘moods’ I mean one minute I’ll be laughing then the next moment my eyes are leaking! I have been very fortunate tonight as one of my friends made me laugh so much the tears stopped!
Another friend also did a great job reminding me how this illness can make us feel so terribly alone when in fact we aren’t!

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On the positive side I have heard from my MS nurse today, finally! Just to recap, its been nearly 3 weeks since I first contacted them after seeing my GP on the 21st September. This is when I noticed I still hadn’t got much feeling in my legs. The reduced sensation was starting to creep higher up into my thighs. My legs didn’t feel like my own and my walking was getting worse too. My GP seemed to think it could be a possible relapse but, due to my medication that I am prescribed by my Neurologist ‘Tysabri’, I usually have to be seen at the hospital before I get prescribed steroids to help reduce inflammation in my central nervous system. My GP asked me to contact my MS nurse for their opinion before she would prescribe any steroids for me, believe me, I wasn’t in any rush for these!

On Friday I found myself back at the doctors because I felt as though I was getting worse and fast! I wasn’t panicking like I have in the past, I guess maybe because I’ve come to realise that in panicking I only make myself worse!
It wasn’t the same GP that I saw the first time I way there  with this current exasperation or relapse. He checked my sensation in my legs and  my lower abdomen which is when I realised I had lost sensation all the way up to my bra line!
My walking was getting worse so the GP wrote me a prescription for steroids, he gave me enough to last me up until I see my MS nurse on the Tuesday! When I collected these steroids I thought the GP had only given me a low dose to ‘tide me over’ until seeing the MS nurse Tuesday 13th October.

Okay, all caught up?

Back to the phone call from my MS nurse who, by the way I am totally grateful for as I know so many people who have MS are without MS nurses.
I feel awful that I had to get PALS involved but needs must, especially as they weren’t returning my calls and I wasn’t getting any better!
She has cancelled my appointment to see her tomorrow and instead has booked me in to see one of the Neurologist’s on Wednesday. This Neurologist is the one that once told me I was a ‘fatty’ and because I was in too much shock when this happened, I didn’t do anything about it!
I have asked for someone to be present at the appointment so the MS nurse said she will be there for me.
She told me that she is concerned that this may in fact not be a relapse as I should have noticed some improvement by now from the steroids. I know in the past though that steroids have either not helped my relapses or have taken longer than 3 days to work!

My question though is this, if it isn’t a relapse then what is it? I know I don’t feel right, my walking is terrible and I can’t feel my legs along with other issues!

I also spoke to the nurse about the steroids I had been given which she thinks are the same as what they prescribe so maybe they aren’t a lower dose and in fact only a day short of the normal course so that the Neurologist can decide if he wants me on them one more day!

The nurse did however notice a change in my speech which seemed to concern her! I was told by a speech therapist that I may in fact be experiencing changes in my speech due to MS fatigue. I have to speak with the Neurologist about this on Wednesday!

Back to the steroids, one thing that can we can count on when taking this rather horrible medication is a change of appetite. This can be any thing from an increase where you literally want to eat everything you see or a decrease, yes you guessed it, the exact opposite!

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Here’s my top four silly things I’ve done today!

  1. I’ve opened a treat bag size of Cadbury’s chocolate! Whoops! The worst thing to have around me when I’m taking steroids is Chocolate!
  2. I’ve not had any lunch today, so the appetite was there for the chocolate but not for anything else.
  3. I don’t know where today has gone. No seriously, where does it go! I remember now from my last course of steroids, they make me over think!
  4. No naughty treats for me tonight! Just fruit & yoghurt as I haven’t had that today either, gah, I’m rubbish today at being good!

BASICALLY I’M A NUMPTY & THE STEROIDS MADE ME DO IT!

It’s been a funny old day today! Saying that it’s still been a good day with a couple of very positive emails. Future plans are afoot and very exciting ones at that! I’m such a tease because other than that I can’t say anything else!

 

Sorry if this blog has been a little on the ‘rambling’ side but it’s what steroids do to me! I’ll be back to normal soon, I hope! Oh and it’s a day late to be published as well! Oops!

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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