Tag Archives: relapse

Aug 02 2015
26 Comments
Symptoms and Treatment

Here We Go Again …

RelapseYou know how it starts, that ‘whoops, where’d my brain go?’ sensation.

That out-of-the-world feeling, the disconnection, along with the overwhelming fatigue, stumbling, mangled words, etc.

It must be Relapse Time.

MS has flicked through it’s malicious diary, thought, ‘hmm, let’s see, last one was in …. oh yes, February. I’m thinking August sounds about right. Bring it on and let the games begin’.

It started three days ago and I’m struggling to get the bare minimum done. And by bare minimum, I mean barely getting by with the minimum. The washing basket is overflowing, the paperwork is mounting up and I’m re-reading the same page of my novel over and over again. Some bright spark chose ‘A Suitable Boy’ by Vikram Seth for our next book club. 1500 pages. I may have to Wiki it.

On the other hand, The Teenager is having a fabulous time shouting out, ‘watch the wall!’, ‘d’oh, there goes another plate’ and ‘nah, don’t understand what you’re saying, soz, that’s not even a word, muvver.’

Luckily at work on Friday, there were loads of people on site, so I was able to sit in a corner pretending to look at complex building plans. Whenever anyone walked past, I whipped out a pencil and appeared to be calculating steel beams and floor boards. I got away with it. Back home, I stumbled to my sofa, collapsed and lay there for three hours.

I physically couldn’t get up. I wanted to, I needed to get stuff done, make dinner, appear normal, be a mum. I simply couldn’t. The Teenager came downstairs, modelling his newest t-shirt. I cocked an eye open, told him how lovely it was and apologised. What more could I do?

The next day, I woke up, yawned, went out for the essentials, yawned, came back home and went back to sleep. When I woke, I yawned and thought about going back to sleep. I stumbled to the kitchen, yawning, dropped a plate (this one bounced) then back to the sofa. And repeat.

The only ‘good’ (and I hesitate to use that word) thing about a relapse is that it concentrates the mind right down to the base level. If you can just drag yourself through the day, that’s an achievement. Nothing else matters. All the stress of the last few weeks means nothing when you’re gripping bannisters and falling over in the kitchen.

The aim is to get through this as quickly as possible, to yank my brain back from it’s wanderings. To rein in all the physical symptoms so that they’re more manageable. In short, to become me again.

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Mar 11 2015
8 Comments
Symptoms and Treatment

The Day Baked Beans Made Me Cry

bakedYou know that whispered word, beginning with an ‘R’ and ending in ‘elapse’?

Well, I’m not sure if it’s a flare up or the dreaded ‘R’-word. Whatever it is, it’s awful.

It started over a week ago with the usual brutal, gatecrash-entry that MS specialises in.

A sudden, total collapse in energy, not seen since 2011. Garbled speech, crazy balance and a sense of being utterly spaced out; so much so that I have now nicknamed myself The Space Cadet.

Just to make things even more interesting, I’m having weird jolts of vertigo. Not continuous (I can just about cope with that), but sudden, horrible shifts in my vision, like a camera-shutter adjusting itself rapidly (younger readers, you may have to google this).

And if that wasn’t bad enough, I’m now feeling nauseous every evening.

Oh, and one more thing. The bizarre crying. I cry at everything. A piece of music, a random comment, the cat running up my curtains. And baked beans.

That was the final straw. Who on earth cries when they make baked beans on toast?

The Teenager had requested this particular meal choice when I was writing the shopping list for the week, a monumental task. So, great. Easy, fairly healthy, quick.

On the fateful evening, I assembled everything and served it up. I looked at the plate and burst into tears. The beans just looked so … sad. So vulnerable and innocent and somehow, a little bit lonely, even though they were surrounded by other beans. It was then that I realised I needed professional help.

So I called the MS team this morning and left a rambling message. I had a call back soon after and blurted out my tales of woe, capping it off at the end with, ‘and apart from that, I’m fine!’.

The Teenager is away in London this weekend, so maybe I will have some time to gather myself together before I go back to hospital with my Baked Bean Saga. How embarrassing. Kittens, babies, parcels tied up with string I can understand, but baked beans? I have a feeling I’ll never live this one down.

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Jan 30 2014
22 Comments
Emotions

Catching Me When I’m Falling

depressionHours, days, weeks can go by and I’m absolutely fine.

I have a good life. MS is under control (just about) and no longer scares the living daylights out of me. I sometimes struggle to remember what life was like before it.

So why do I have moments when I plunge into a deep, black depression? Just like MS, there is no way of knowing when it will strike. I can have had the best of days, life is on track and the future is looking a shade more defined than before. Then suddenly the shutters come down, blocking out the light.

This sensation is like a relapse of the mind – a sudden, catastrophic descent into despair. I’m aware it’s happening, just like physical relapses when there is a period of disconnection before the symptoms flare up, snatching control of my body away from me.

I know people with MS are more likely to experience depression, whether due to our circumstances or from our brains playing havoc with our minds. Whatever the explanation, I need to find ways to cope with this. Perhaps it’s been around since MS started but I was unable to distinguish it from the shock of the diagnosis. Now life has reached a happier plateau, maybe I can see it in unsplendid isolation.

When it happens, I want to retreat, hide myself away and wait until it passes. But life gets in the way. I have a Teenager to raise and a house to run. I have a life.

My friends and family are unfortunately becoming used to helping me pick up the pieces. They catch me and hold onto me so I don’t fall any further. They don’t try to cheer me up or tell me how much worse it could have been. They are simply there for me.

If I knew how to fix this, I would. It’s an unwelcome visitor in the new life I’m constructing for me and my little family. It lifts as suddenly as it comes. Colours burst through once more and life is shiny, exciting and vibrant again.

I am trying. I can’t retreat, but I can sit out the storm.

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Jan 19 2014
6 Comments
Blogging

I Think The Glass Is Half Full

Patrick

Patrick is my guest blogger today – although MS has been in his life since 1979, it was only in 1999 that it changed from mild RRMS to SPMS:

Like nearly all of you I’m an MSer. My first relapse was in 1979. I was 25 and newly married. A problem occurred, my bladder emptied itself and I had no control over the event, there was a feeling of total helplessness.

The nightmare scenario did not return. Being a typical bloke I did not go to a doctor, I put the whole thing down to stress of trying to be an antiques dealer.

Next problem was 1994 when I had double vision. I was frog-marched to my doctor who referred me to a neurology consultant. Meanwhile the double vision went away but I was in the NHS system. Six months later the consultant said I had multiple sclerosis and to book another appointment for 6 months down the line.

Back at home I looked up ‘multiple sclerosis’ in the Encyclopaedia Britannica. I learnt it was an incurable disease affecting the nervous system. I was none the wiser.

Someone at work suggested I go to the local MS Therapy Centre near Aylesbury. There I picked up pamphlets from the MS Society and slowly I learned more about the disease that was not affecting me.

In 1999 I went on a 16 mile dog walk around Ashridge estate and cooked supper for the family. Then slowly progressive MS began to emerge, maturing into something that now has a profound effect upon me, my wife, our three children and our friends.

At the start of 2014 I have severe foot drop in my left leg, I can only stumble a few yards without my rollator, my sense of balance has gone AWOL and I have to do intermittent self-catheterisation. I am not allowed to drive and In 2012 I had to give up my career as an international computer geek. What else has MS got in store for me?

Today MS has turned the life of my wife and myself upside down. She helps me to beat it. I talk MS to students, nurses, and anyone else who will listen to me. I also run the website www.aid4disabled.com. Through networking I have met a wide range of people who help and encourage me.

Yes MS has forced a complete change in our lives and yet we survive. I’m reasonably content, can still do things that I enjoy but nonetheless I’m hugely frustrated.

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Aug 24 2013
6 Comments
Blogging

Emotions….

Craig's pictureCraig is my guest blogger today. He’s just started his own blog, so check it out at www.jonnyspandex.blogspot.co.uk.

Hi, my name’s Craig. I’m 27 and from Leicester, UK, and I’ve got MS (shock!).

Sorry if I’m sat funny, I’ve just injected copaxone in my stomach.

So, after my request for a guest blog was accepted, while I made a tea for the missus and installed MS (see what I did there?) Word, I got to thinking about what I wanted to say, the ideas just started rolling! But I had to pick one, which is like when you have to pick one thing out of several you like and want. So I’ll start like this:

Emotions. Emotions are like MS. We know what they do, and how they work (how symptoms occur in MS, not the disease itself). The issue with both is that we don’t know how to stop them. My daughter is deaf, has been from the day she was born, but it was caught fast and she got hearing aids. At 4, it started deteriorating. I knew it was coming, but the night her deaf teacher rang and told me, I cried my eyes out. I knew exactly why I was and the reason scares me. I’d lost control of the situation, we’d countered on her hearing loss with the aids but it wasn’t going to be enough as it got worse and I was powerless to stop it. Quick end to the story, she’s now got cochlear implants and is fine! 🙂

Right now I’m doing things to hopefully help with MS; I’m in control (aka remission!). But with my first relapse, it hit home at the seriousness of what I’d got, that night I lost control. I’ve still got a lingering side effect, but it’s part of me. More recently, I’m looking at situations in life more and more and imagine what it’d be like. I could actually cry at soppy films sometimes, not because Di Caprio dies at the end (hat that film!)  but because I’m relating to stories so much more. A PPMS sufferer I speak to on Twitter (sorry, Steve, it’s you!) was having an especially bad day and what I read on it made me so angry, that I/he/anyone can do nothing for it. It made me feel so many emotions but again, no on has control over it, all you can do is sit back and watch the proverbial hit the fan.

Forget all that anyway, the footy’s back!

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