Tag Archives: multiple sclerosis

Could Someone Rewind This Year Please?

tiredWell.

It’s almost May and it might as well be February, as I’ve been in an MS-imposed hibernation since then. All my Grand Plans for 2017 have come to zilch.

This latest relapse has been tough and it’s taken all my diminished strength to get through it.

As always, life shrinks to the absolute bare minimum. It’s a case of getting through the day. The pain has been crippling, the fatigue all-encompassing.

As I emerge from my MS cocoon, it seems the world has moved on. I’m still wearing my Nordic sweaters and ordering ready-made hearty soups from Tesco. I’m watching dark Swedish dramas on telly and wondering where to introduce dramatic black paint into my house. In short, I’m still in Winter-mode when everyone else has dusted off their shorts and barbecues. S’not fair.

If I had the energy, I’d host a pity-party for one, just like I did way back when I was first diagnosed. It’s been an incredibly long relapse compared to the usual three-weekers.

Anyway, enough whingeing. The Teenager and The Cat have been getting on with their lives in the meantime and handily for them both, I’m pretty much always available to speak to as I loll on my sofa trying to maintain a semblance of normality. I’m a captive audience:

  • The cat enjoyed her course of steroids (it cracks me up that she was on the exact same ones as I’ve taken for relapses in the past) and her fur is growing back. Mind you, her tail looks a bit weird as it’s still fairly bald at the bottom.
  • She’s being bullied by a new cat on the block, resulting in sudden scamperings into the house, nearly giving me a heart attack.
  • Two mice have been left right outside the back door. I stepped on one of them.

As for The Teenager:

  • He pushed his way through the 1000-strong crowd on the Common outside my house to get a selfie with Jeremy Corbyn when he spoke here last Friday. Random, but true. Jeremy looks slightly bemused.
  • He has finally worked out how to use the oven; luckily the house didn’t blow up when he left the gas on overnight after cooking a couple of chicken breasts. But at least he got his protein.
  • I attended an overnight MS Society Council meeting at the weekend and said to him in a misplaced spirit of generosity, ‘why not have a couple of friends round?’ And, ‘feed the cat’. Long story short, ten hulking teenagers were squeezed into my house, my recycling bags are filled to the brim with beer cans and I’m still finding bottle tops down the sofa. The cat is alive.

Hopefully, I’m turning a relapse corner and I can start playing catch-up on the year which is passing me by in a blur of supreme inactivity. Or maybe I should throw the towel in and start writing my Christmas list …

p.s. I know there’s a spelling mistake on the picture – just too tired to correct it …

Tagged , , , ,

Don’t Be Strong … Just Be You

Be youEver heard:

  • Oh, you’re so strong, I really don’t know how I’d cope if I were you
  • You’re strong … I just know you can do this
  • You’re never given more in life than you can cope with … you’re so capable, you’ll do it

All lovely, life-affirming sentiments, intended to bolster us up and make us proud that we are somehow ‘battling’ MS.

Well, here’s the secret:

There is no battle.

All this military talk, of battles and fighting. Did you ask for this? Probably not. So, there is no battle and no fight.  Most battles/fights are fought with both sides having some kind of previous information, i.e. ‘There will be a fight tomorrow, be there or else, and bring your flags and biggest blokes, ta. P.s. your trench looks great’.

MS does not fight. It invades, when you least expect it. It inveigles itself right inside your life before you even have time to draw breath. So where is the battle in that? It’s like a tug of war with the winning team walking casually away pulling the rope while you’re still in the pub having a Pimm’s and catching up on the darts or Putin. Or something.

Going through the MS diagnostic process, I heard all of this. I was pushed into a position of ‘Fighter’. Quite suddenly. I wasn’t coming to terms with an incurable disease, I had to fight it. Erm, how exactly?

Now, on the cusp of my fifth anniversary of being diagnosed with MS, I realise I have never been a fighter and never will be. I run away at the first sign of trouble, which is probably why I held an extended MS pity-party for a couple of years, wailing ‘It’s not fair‘ to anyone kind enough to listen.

We all deal with MS in our own, unique way. It is, by it’s very nature, a unique illness and no two people with MS are the same. It is impossible to fight an illness which hijacks your immune system; we can merely accommodate the symptoms with medication.

According to so-called internet experts, my MS is due to familial connections, growing up in Scotland, having Nordic genetics, drinking Diet Coke, chewing gum, being exposed to life.

All well and good – a bit like closing the door when the horse has bolted?

Believe me, if you’re fairly newly-diagnosed, please don’t feel under pressure to ‘fight’. Allow yourself time; time to grieve, time to feel sorry for yourself and most importantly, time to realise that MS just … happens. It is not your fault and you do not have to become a flag-bearer.

Look after yourself. I think all of us living with MS could do well to remember this?

Tagged , , ,

With A Little Help From My Friends …

trashNot only has this latest relapse rocked my working world, it’s made me appreciate the smaller things in life.

I’ve snaffled some cut-down branches from one job to make Easter branches and have rescued some spare wood from another, with a view, at some point, to crafting  hollowed-out candle-sized logs …

I was out at 6am this morning, hanging up washing. Relapse Tick.

I replied to some emails. Another Relapse Tick.

I made three coffees for myself. Relapse Tick again.

And that’s it.

This whole time, through this hideous relapse, I have been alone. And then it hit me. I no longer have friends who will just pop over. I’ve isolated every single one of them.

I scanned my contacts list. Some were in a relationship and had found their happy MS medium, and I am thrilled for them. Some had large families and a whole lot of support. Some were suspicious of a single MSer. And some had no idea I needed them.

Had I run out of MS favours? Am I now so used to surviving on my own that I have become the person I always feared I would be – the Single Female with a Cat?

In that way, I certainly do tick all the boxes. I talk to her (The Cat). I judge her moods and respond accordingly, which is rather sad.

But back to the bigger issue – I have a wide circle of fantastic friends whom I love and adore yet I miss having friends who are there, no matter what. I think I’m one of those. Most of my friends have had various crises over the years and I’m there as soon as they put the phone down. I do my utmost to be present, in whatever capacity they need me.

Last week was a shock. Have I got so used to solitude that this is now my New Normal?  Am I now condemned to talking to the laurel bush in my backyard?

I miss my friends, but more the point, I realise I have not been the best of friends.

Tagged , , ,

Commiserations and Celebrations …

listeningThis post is a very big thank you to everyone.

I’ve been going through my own personal relapse hell these last few months and it’s thanks to you guys for keeping me sane; here and on Twitter.

Meeting with my MS nurse yesterday just showed me how important it is to be listened to, both by the MS professionals and my MS peers.

You haven’t shirked from my odd symptoms, you’ve sympathised with my sofa-bound enforcement. You’ve cheered me up and empathised when times were hard.

In a way, I’ve made sense of this relapse thanks to you. Each post I’ve written during this time has given me the most insightful comments, a lot of which I took to yesterday’s appointment.

MS for me is isolating and lonely. Get the violins out, but there is no Significant Other. No one to pick up the pieces, to cook dinner or flick a duster around. So the camaraderie I gain from you means the absolute world to me.

The knowledge that no one has to go through a relapse alone is empowering and comforting.

I hope you all know just how much this means to me.

Thank you.

Tagged , , ,

Slapped Around The Face With A Prawn Sandwich …

prawnI saw my wonderful MS nurse today.

We discussed my relapse (which started 18th February – I write everything down; dodgy MS memory). It’s still rumbling along and the symptoms include but are not limited to:

  • Out-of-proportion MS fatigue
  • Walking round in circles
  • Falling over
  • Numbness, tingling, massive increase in nerve pain
  • Problems with hands
  • Problems with walking
  • Slurred speech

And so on. It was incredibly therapeutic to go through them all, linking the dots, feeling that what I’m in the middle of experiencing is … normal.

If I was asked to describe how this particular relapse feels, I would say it feels exactly like being slapped around the face with a prawn sandwich. Repeatedly. You kind of know what to expect at first, and if it was a posh sandwich, the bread would be firm and the little embedded seeds would annoy you. Then the spinach leaves would fall out and finally the spiny bits of the prawns would really annoy you.

It’s a subtle build up. Before you know it, you’re deep into a relapse.

I was asked how I felt, emotionally.

‘Trapped. Isolated’.

My home is my absolute focal point right now and I spend an inordinate amount of time making it look nice. I’ve constructed an Easter tree from abandoned branches, picked up leaves from my back garden (sitting on the ground, gathering them in a pile and shuffling to the next circle) and ordered everything I need online, from food to new underwear for The Teenager.

I go to work, come home, recover, sleep, go to work, come home, recover, sleep.

It’s incredibly boring. To liven things up, I Plasti-Kote’d a plant pot with black spray and spent a good few hours arranging my Sharpies in it. I have counted how many loo rolls we have left and divided it by The Teenager. I changed the bath mat. It’s that exciting.

My MS nurse asked why I hadn’t come in to the clinic at the start of the relapse and I proudly told her I was now an experienced person with MS and sort of knew what to expect. I didn’t fancy the all-night-party element of steroids and felt I could Go It Alone.

I was wrong. I should have called. The sheer relief to talk to someone who knows. I feel significantly less alone this evening and that means the world to me. It won’t change the barrage of symptoms but I know that somewhere I am cared for.

During the worst of the relapse, The Boss hooked me up to his Netflix account and I can confirm I have now seen every single episode of each of the four series of ‘Orange Is The New Black’. That’s 52 hours of telly.

I’m being sent for another MRI (yay, claustrophobia here we come), and we’ll take it from there.

To be frank, I’m a tad concerned …

Tagged , , , ,