Tag Archives: MS

Being Ill – Not For The Faint-Hearted

fabWhat’s it this time?

A relapse? An ‘exacerbation of symptoms’? Or just the usual?

Whatever your MS nurse, neurologist or doctor calls it, you feel pretty bad.

Worse than that, you feel dreadful. Terrible. Horrible. And everything else in between.

But wait, your colleagues and friends will make you feel better:

‘Wish I was you, would love a week off work, dossing around, watching telly.’

‘A week in bed? You serious? Eaaaaasy life.’

Yeah. When you’re in fairly good health, a week off must sound like bliss. When you’re truly ill, it’s evil, and no doubt you’re wishing you’re well enough to be in work as anything is preferable to how awful you’re feeling right now.

What most people don’t realise is, being ill is extremely hard work. It’s certainly not a cushy number; my last relapse showed this only too well. I was ill. All I could do was lie on the sofa. Nice? No. The nerve pain gnawed away at my legs while the fatigue bashed my head in. Everything hurt. I couldn’t read, I couldn’t concentrate. All I could do was … lie there. Being ill.

And all the while, rushing through my head was a stream of things I couldn’t do, but had to – the laundry, the cleaning, the shopping and cooking a basic meal for myself. The latter tortured me. I could taste the boiled egg, but it took me over three hours to get up up and do it (I have one of those six-egg electric egg boilers – couldn’t find the energy to turn it on).

To be frank, I can be as guilty as the next person. I never really understood people who had the flu, until the one and only time I had it, two years ago. I literally, quite literally, could not get out of bed. It was a relapse x 10. And extremely frightening, especially as I was the only responsible adult in the house. In some ways, the mental anguish was worse than the aching limbs and complete inability to sit upright.

Someone once said to me, quite soon after my diagnosis, that you have to be strong to cope with MS, and, boy, they weren’t wrong. If you let it, it can become a full time job. Constant pain, constant fatigue, immeasurable fear of what happens next. Plus, there’s no end-point.

You know that chic trend for ‘pop-up’ this, that and the other? Shops, stalls, cafes? For me, MS is a bit like that, except not as nice. They appear one day and are gone the week after, having cashed in their pain tokens and left.

And even when you’re Not Very Ill, there’s the constant undercurrent of symptoms, most of them invisible. Going to a Port-a-Loo six times a day when there’s eight men on a site isn’t pleasant. However, lying down on a pile of plasterboard and nodding off is, so perhaps I now look for the silver lining.

I find it bizarre, at my age, that I’m coping with an endless barrage of symptoms, day in, day out, and have been doing for the last six years. I should be thinking of other things now that The Teenager is off to Uni next week – taking up Salsa (lol), learning how to make sushi, immersing myself in Yoga for Complete and Utter Beginners.

Next time someone says how cushy it is to be ill, take my advice.

Ignore them.

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Lots of Regrets

regretsWith just over a week to go until I take The Teenager to University, it’s a curious time.

It feels somewhat like suspended animation, this period between A levels and the big, wide world.

He has the makings of an independent life packed into three huge Ikea blue bags with more to come.

He’s here, then he’s not, dashing off to music festivals, tent and sleeping bag strapped together, only stopping to load up on fresh laundry and food that magically appears in the kitchen.

I bitterly regret the fact that MS came in to his life just as he was starting high school; as he was growing and exploring, he witnessed my world shrinking. Me, the stable, always-there parent who had criss-crossed the world several times over and had the stories to prove it. The illness was swift and brutal.

His pet hate was seeing me asleep on the sofa, so I tried my hardest to set alarms, sit bolt upright and quickly look at my scribbled lists, reminding me of who had argued with which kid, teacher’s names, which ingredients to get for the cookery lesson. My first major relapse, the one that affected my speech, didn’t help. When you can’t even string a sentence together, life is frightening.

Eventually, we laughed about it and even today, The Teenager still does a remarkably good impression of me back then – talking English with a German syntax, chucking verbs to the end of sentences, with a huge dash of nonsense thrown in.

Life became a battle of lists, remembering and alarms. I’ve mentioned it before, but finding him brushing his teeth with tears rolling down his cheeks killed me inside. He hated what MS had done and what it represented. He became used to the tiredness, the stumblings, the smashed cups, but it was still a volatile force that threatened his routine.

Of course, life for both of us would have been a lot easier, had my ex-husband stepped up to the plate. At first, he was assuredly positive. He vowed to take on more responsibility, especially as I was undergoing strong treatment at the time, Camapth, which essentially leaves you without an immune system for at least six weeks.

Reassured, I went for my first treatment. My ex had The Teenager for three days after the treatment, which lasted five days. The second time, I was on my own. The third, I made my own arrangements. Luckily, I didn’t catch an infection.

Strangely, from the moment my ex-husband said he would help out more, he ‘helped out’ a lot less. Aside from the fact that looking after your child for two days out of thirty shouldn’t be seen as ‘helping out’, it makes me chuckle ironically when I think about the amount of times I took The Teenager to town as a young child, ready to meet his dad off the train, only to have a text message saying he had a cold, or was unwell, and unable to come through. At the last minute.

Perhaps he was too occupied getting his second house in Barbados built? Quite possibly. But having had to live with my mother for four years and rent for fourteen, I wouldn’t know.

Me and The Teenager have battled MS over the last six years, for good and bad. The bad times have been horrendous, the good, glorious. He is a caring, independent, go-getting kid, despite everything thrown at him.

My only wish is that he will thrive despite MS. And, I think he will.

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Denying the Anger of Bargaining with Depression and Acceptance?

griefI don’t know about you, but the so-called ‘5 stages of grief’ annoy me.

It’s too neat, too … sanitised and packaged.

MS is anything but.

So, you get your diagnosis (of this life-altering, incurable illness) and then you seamlessly glide from the Neurology Consultant’s office onto this Grief (for your old, pre-MS life) Conveyor Belt, at the end of which you happily reach Acceptance and proceed to remain a valuable member of society? And you have the leaflets to prove it.

Yeah, ok.

This concept was devised by Elisabeth Kubler-Ross in 1969, primarily in dealing with terminally ill people, but has since permeated everything from illness to divorce to coping with not having your smartphone to hand for 24 hours while it’s being repaired.

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

In the right hands, it can be a useful tool, especially if you make clear that we can go through the stages in any direction, not necessarily in this order and we can boomerang between all of them for years. In the wrong hands, it can be yet another pressure to conform to what is deemed ‘normal’. You’ve got MS? Go through this and you’ll accept it. You’ve not accepted it? What’s wrong with you?

In my own case, I never once denied I could have MS. In fact, with a family history of it, it was my first thought when my body failed spectacularly, despite the initial diagnosis of a stroke. Anger? Self-pity, yes. In buckets. I’d like to add this to the ‘stages’.

Bargaining? Never entered my mind. I’m confused to what it actually means. If I do this, I get that result?

Depression is almost a given for any life-changing illness, so I think that goes without saying.

Acceptance? It comes and goes, probably in tandem for each relapse. Just as I think I’ve adjusted to MS, it throws a curveball.

There is no magical formula to coming to terms with MS. I wish there was. Just as MS is unique to us all, so are the ways we cope with it. So, resist that conveyor belt and be true to yourself. If you want to scream and shout, shut yourself away for days eating nothing but ice cream or you fancy painting the town red, do it.

Should you ever reach Acceptance? Have I ever climbed Everest?

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If I Had My Choice, I Would Fire The Scriptwriter

shockedI was is in work the other day and in amongst a conversation about the previous night’s ‘Game of Thrones’ and the price of jacket potatoes, the attention suddenly switched to me.

‘Oi! What’s up with your face? You having a heart attack or something?’ (builder humour).

It was a hot day. My face was burning and bright red, so I yet again explained MS heat intolerance, one of my first and most annoying symptoms, trying to put a jokey slant to it.

‘Oh yeah, that old MS excuse again. Don’t you ever not talk about MS?’ Now, this may seem brutal, but bear in mind this is a building site, they’re all friends and I can give as good as I get. So I did, and cut him down to size.

A while later, more unsettled than I wanted to let on, I casually asked if it’s true, do I always talk about MS?

‘Um, kind of.’

I found a shady corner, sat and sulked for a long time (admittedly, not very grown up) and brooded. It was bugging me. I always prided myself on putting MS to one side and getting on with the job. Apart from when I can’t, and I stay at home, the beauty of a flexible job. I thought I had a ‘work mask’. I’d calibrated my working day so that I started early, finished early and spent the rest of the day recovering before starting again. To most people, I should appear perfectly fine. 

Finally, it was time to go and I continued sulking in the van. Then I thought about it on a different level. They were perhaps right, but it just showed how much MS dominated my life. I try to keep it in a box, or at least a separate part of myself. I’ve tried to come to terms with the totality of it, but maybe it hadn’t really sunk in.

I ran through work scenarios:

  • Unable to work in the sun – MS heat intolerance.
  • Being tired all the time – MS fatigue.
  • Tripping over at work – MS foot drop.
  • Garbled speech – a hark-back to one of my first symptoms.
  • Brain freeze – MS cog fog.

Yep, it was all about MS. To me though, it’s all normal now. So it’s not so much that I talk about MS all the time, it’s when people ask me why I did this or did that, the answer almost always wends its way back to MS.

Maybe they could focus instead on how much I have moved the company forward, which has nothing to do with MS; my superb organisational skills, my rapport with clients, my eye for detail and my all-round fabulousness?

What do you think?

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The Teenager Is Off To University!

awesomeNever have I been more proud of The Teenager than I am today.

He got his exam results and has secured his place at University.

When MS first raised its ugly head, he had just started out on his high school journey. When I think back to what he had to endure, I could cry.

He witnessed my first proper relapse in all its frightening, bewildering intensity. He saw me lying on the sofa, hour after hour, unable to carry out the most basic tasks. He asked around his friends for lifts to rugby, to football. My friend went in my place to Parent’s Evening.

He knew about the vicious bullying I was experiencing in work, culminating in my dismissal for MS. He heard about the legal proceedings, in amongst worsening relapses. And all the while he was trying to forge his own identity as a Teenager. A hefty burden at the best of times.

It’s always been just me and him, since he was a baby, and I’ve always tried to be independent, fearless and positive. MS changed all that. We both took a huge dip. It knocked us sideways. It took a while (years), but we got through it and we came out stronger.

Regular readers will know him really well – you’ll have heard about our fair share of ups and downs, run-ins and tantrums. I hope you’ve seen though, as I have, how he has grown in to quite an incredible young adult.

I know most parents boast, but if there’s ever a blog post for me to do that, it’s this one. He’s a totally amazing individual, with a real sense of who he is. He’s considerate yet determined. All fears I had that he would internalise the emotions he was experiencing with the MS have been laid to rest. I can only watch in wonder at how he goes out and grabs the world with both hands.

We had many quick text and phone chats this morning about his impending move to Bristol (according to The Teenager, ‘far enough away to be an adult, close enough to be handy’). I’ve been issued strict instructions for Drop-Off Day:

‘Mum, right, you can take me there with all my stuff and help sort my room out. You’ll make it nice?’

‘Of course, dear.’

‘Then I’ll have to say goodbye. You won’t cry, will you?’

‘If I do, I’ll do it in the car, don’t worry’.

‘Good. ‘Cause then I have to go to the kitchen and meet everyone else’.

‘I know. Do you think you’ll need an egg timer?’

‘Muuuuuuuum?! I’ve got a list of stuff to get, like don’t worry’.

‘Ok. How many shower gels do you reckon you’ll need?’

‘Muuuuuuuuuum’.

Today is beautiful – we made it. He made it. And in a way, The Teenager had a far bigger mountain to climb than me. I’d lived my life before MS came. He had it flung at him far too young. But he took it, dealt with it and succeeded despite it.

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