Defeating the MS Monster

Primary progressive MS
1

MS is a disease which attacks the very being, our experience of who we are.

As our perception of the world, the physical world around us, is entirely dependant on our sensory organs; to attack, diminish or alter how our senses communicate with our brains, the central processing unit; is to alter the way we perceive this world.

MS changes the world because the way we experience it has changed. New sensory information clashes with our memory of what we expect the environment to be and this causes confusion.

Food tastes different; odours now don’t match what we expected them to smell like. Textures, once rough, feel smooth and the hands feel as if you’ve fallen into a patch of nettles and are now covered in a tight fitting oven glove. They tingle or sting, while at the same time you can’t feel small objects like needle or even a knife and fork. Are you holding this mug tightly enough to stop it from slipping; or too tightly while changing a light bulb so that you might crush it?

Vision; our most used and useful of senses, precious and reliable begins to send messages about shapes and shadows that aren’t there. Or are they? If you’re about to cross a road it helps to know if you are in danger from passing vehicles. If you are reaching out for the handle of a pan of boiling soup do you know where your hand is?

Hearing, although apparently normal, seems to amplify noise and makes your speech stumble and stutter as my brain hasn’t had time to relearn how to filter out the important information from the background hiss and thunder we now hear. This is a skill we spent the first few years of our lives honing. Now, that’s all changed.

You might as well give me some LSD and put me onto a carousel for a week for all the good my senses are now. How am I going to retain my sanity?

As my new spine sends the wrong messages to my left leg it begins to judder and jump as if connected to a car battery, and my biceps dance up and down on my arm bone. Even time seems distorted. What felt like five minutes was actually ½ an hour. The next hour might seem to last ten minutes. What has my nervous system got to do with time?

This is the monster within us and the monster we will all have to tame or overcome if we, the MS community, are going to live with this disease. And that is what our family, friends and carers need to understand. This is what the neurologists and nurses have to be to able to understand if they are going to be able to help us at all.

Please be patient. I’ve got to relearn all these skills. And probably relearn them all in six months because my nervous system has moved the goalposts again. And it is exhausting.

2 Likes
2

Hi Anthony, I haven’t got the energy to give you the response your post deserves…but just want to say I hear you…as I’m sure everyone else on here can too.

Take care & thanks for such a well written post.

Pat xx

1 Like
3

Hello, Anthony.

Your summary strikes a chord. I have many of the symptoms you are relating to. The most puzzling for me is the eyesight. Sometimes I cannot distinguish shades of one colour. I used to drive home from work down a narrow road with a low wall on the left. The angle of the sun, when it was out, made it unclear where the shadow stopped and the wall started. Distances become difficult to judge and the brighter the day the more distant objects merge. I try not to drive any more.

Then there is the tingling. My legs regularly face the flame throwers whenever I move. They are permanently cold while my top half is warm.

In my previous life I was a piano teacher. I spent hours practising, honing my skills. When I look at a piece of music now, I can feel every movement my fingers have to make and every vibration of each key being depressed. Yet when I offer my hands to the keyboard, these two lumps of quivering jelly flap about and make it sound like a chimpanzee playing.

I could go on. This is a true beast which tries to dominate every aspect of our existence.

Every day is a challenge. Thanks for your post.

Steve.

1 Like
4

Hi Anthony, welcome to the forum. What a great first post, most readers will surely identify with at least one symptom in it. You know, if each of us here were to compile a list of our own unwelcome little ‘visitors’, each would be different, everyone’s monster is unique.

Oh the joy…

Ben

1 Like
5

Sounds so familure take care anthony

1 Like
6

Hi Steve,
Thanks for your reply. I wasn’t sure if I’d find anyone on my wavelength when I wrote that piece but I’ve had 5 very encouraging responses so far (thanks guys). I can empathise with you as I used to play the piano myself but the neuropathic pain/numbness makes even typing awkward.

I was inspired to write it by a BBC 4 series about the brain (Thursdays 9pm). In particular the last episode where the presenter described an American study of 1,200 nuns, priests and brothers. They subscribed to the experiment by leaving their brains to medical research.

In nearly 1/3rd of subjects they found that Cognitive Behaviour Tests showed that they had no symptoms of age related brain disease but, at autopsy, their brains had full blown Alzheimer’s. The difference between a healthy brain and one attacked by an auto-immune condition was clearly visible.

The message I got was, that if one continually exercises one’s **mind and body **this creates new neural connexions (pathways) as old ones die off. As the brain degenerates (and by inference, the nervous system as a whole) it benefits by working to find other solutions. By ensuring that our brains are equipped with a variety of tools we can hold onto **who we are **for as long as possible.

I do Tai Chi. But you really have to work at it. I commit just half an hour a day and one lesson a week. After all I’ve nothing else to occupy my time. “It’s alright for you” I hear you cry, “You don’t live in a wheelchair”. Maybe so; but I had PPMS diagnosed six years ago. Last year I asked my MS Nurse if I could get lumbar support as I found it impossible to stand while making a cup of tea. She said, “Exercise. Use it or lose it”. Now I can do ironing for half an hour, standing up, and I’m sixty one. But don’t tell the DWP. Perhaps it’s the Tai Chi that keeps me mobile!

Disclaimer: Other forms of mental and physical exercise are available.

Yours, Anthony

1 Like
7

Hi Anthony,

Welcome to the forum, such an interesting post, I’d love to write an equally interesting reply but my ever shrinking brain has gone awol tonight!

take care,

Nina x

1 Like
8

I too can relate to some of your symptoms Anthony and agree with your “use it or lose it” remark. I’m suffering badly with fatigue at the moment which is killing my body, but really scrambling what little memory and concentration I had, so I’m forcing myself to sit down for at least an hour a day and either doing a sudoku puzzle or having a game of spider solitaire where I can rest the body but test my brain. And it’s helping my concentration a bit.

Jackie you’re spot on with your comment about us being the experts on ms and the symptoms it causes, though to give them their credit, my Neuro and nurse are experts on the theory of it.

Take care everyone.

Cath x

2 Likes
9

Hi Anthony

With regards your mail I have some of the symptoms and some others, but I agree with your paragraph

The message I got was, that if one continually exercises one’s mind and body this creates new neural connexions (pathways) as old ones die off. As the brain degenerates (and by inference, the nervous system as a whole) it benefits by working to find other solutions. By ensuring that our brains are equipped with a variety of tools we can hold onto who we are for as long as possible.

My big problem is my hubby who doesn’t understand that the longer i keep doing this the longer i will hopefully keep this from destroying me, he wants to make things easier for me i know that but how can he understand when his body is working fine.

trish

1 Like
10

Hi Trish,

I’m not qualified to advise on relationship matters.

But.

Try cutting and pasting the text onto a blank sheet. Highlight the pertinent words or phrases. Mark it “Confidential”, “Secret”, “UK Eyes Only” in big red letters and pin it to the kitchen notice-board/fridge/budgie cage (del. as applicable). I guarantee the lovable old lummox won’t be able to resist taking a sneaky peak while you’re out.

You start a conversation about feeling that he’s wrapping you in cotton wool. Say you understand he means well, but you need to stand on your own two feet from time to time. We might have a disability but that doesn’t mean we’re fragile.

Let us know how you get on.

Anthony

1 Like
11

Anthony

tried all the above , afraid he has a lot of disability in his own family , basically he is the only one that is fit. They have also given in to their illness, unlike me who keeps wanting to do as much as possible , he works away so only have to deal with him weekends and holidays

trish

1 Like
12

Like all of the above Anthony. Very interesting post. Thank you and welcome. Anne

1 Like
13

Hi Yawl,

Here’s another take on the, “when the going gets tough, the tough get going” mantra. It comes from a novel, which is one of my favourites, called (ironically enough) “Hell Bay”. A story about life in the 1800’s on the Isles of Scilly, Ireland and the USA.

When God made granite, he decided that it wasn’t hard enough, so he made

I sent it to Ellen McCarthy on the final leg of her solo navigation of the world. Her messages spoke of the raw emotion, desperation, torment, hanging on by the tips of her fingertips, gutsy goal she had set herself.

We didn’t set ourselves the task of surviving MS but that doesn’t diminish the heroism that we all read about on this forum. We are ALL heroes. It’s just that we won’t get a Damehood/Victoria Cross/Extra Points. [d like Ellen did. And she only had to suffer for nine months!

If **you **find a word, a phrase or story that chimes with your own experience, adopt it, make it your own, and dare to whisper it, gently, to yourself in times of need. But don’t forget; we will all still be here after the storm clouds have broken.

Yours, for a new umbrella

A.

(Hell Bay is written by Sam Llewellyn)

4 Likes
14

Hi

I go swimming most mornings well swimming is a large exaggeration but i am in the pool for 30 minutes , and my fellow swimmers are all in their 70-80s we all have our health issues but we don’t give in, it is not the easiest option but in the long term it is the best, as my 84 year old friend will testify to

trish

2 Likes
15

i can’t swim

16

Anthony

you could go into my pool and plod about as it is only 3 feet deep so takes the fear away from being out of your depth

17

I also think the monster is other peoples perception of how you should act, which can be very tiring my hubby is still trying to cope with my MS i now believe i have menopausal symptomd so he hasn’t a clue

18

I should have said I don’t swimming - not I swim. To put it another way; I love being on the water but I hate being in it. I qualified as a Yachtmaster when I was younger and I thought that my sailing days were over when I got MS. Then I remembered something about a sailing organisation for people with disabilities. So I looked it up.

The Jubilee Sailing Trust has two ships built specifically for people with disabilities, the Lord Nelson & Tenacious. I booked a weekend “taster”. Here’s what I wrote at the time for my local newspaper:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~ The Beginning ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

At the beginning of July 2014 the Hub had to make do without one of it’s volunteers. This is because he went sailing. For the purposes of this article we shall refer to him as Anthony; mainly because that is his name. Anthony has multiple sclerosis which, in his case means he had little control over his left leg and he does have to contend with some other, more personal, issues of hygiene, which we won’t go into.

Several months ago Anthony discovered the Jubilee Sailing Trust, an organization which has two tall masted sailing ships which were designed and built specifically to accommodate people with disabilities; Lord Nelson and Tenacious. This is Anthony’s account of his adventure.

Wednesday 4 July: Arrived Southampton Docks and went aboard Tenacious at 1300 (1 p m). Shown to my bunk and introduced to my able-bodied buddy Rob. We were given the obligatory safety drill and exercise before casting off at about 1730 (half past five). We motored down Southampton Water. I was on the wheel with a Pilot who gave me instructions (port 10, starboard 5 etc.) with the general idea of getting the ship out to sea without banging into anything solid. As we entered the Solent another volunteer took the helm as I went down from the bridge to the main deck where most of the crew climbed up the foremast to a platform, had a look at the scenery (mainly sea and bits of the Isle of Wight then came back down again. We hauled on a lot of ropes (clew lines, buntlines, braces and halyards) with the sole knowledge that we were preparing the yard arms to point in the right direction when we were to set the sails the following day. We spent the night at anchor on the east coast of the Isle of Wight.

Thursday 5 July: A beautiful day. After breakfast we weighed anchor and set off south east, away from land. We set six square sails, three jibs and tootled along in light winds at about 4 mph. After a day of basking under a cloudless sky we headed back to our original mooring off the Isle of Wight. I had doubts about how I would cope as I hadn’t been to sea since the MS symptoms were diagnosed. But apart from being unable the climb up the mast I was involved in all other aspects of ship handling.

Friday 6 July: Due in Portsmouth at midday so set off directly after breakfast. We arrived to see my wife waving from the quayside. I went down the gang-plank and spent several minutes just taking in the magnificent sight of the whole ship and with mixed emotions left the dockyard. Glad to be home, sad to have to leave. Exhausted, but very, very happy.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~ The End ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

P.S. In the JST’s brochure there is a photo of a woman (in a wheelchair) being hoisted up a mast. Strewth, she looks so happy!

My message is; MS is not the end of Life, just learning to accept that your going to have to learn how to live Life differently. If there’s a way to show photos on this forum I’d really like to share mine.

A Weigh A.

19

Trust me. Men never will.

A.