If anyone wants to guest blog, just drop me a line.
Around 400 words , about anything you like to do with living with MS. No holds barred.
Stumbling in Flats
. . . a funny old life with multiple sclerosis
Laughter on Prescription
I woke up yesterday morning full of the joys of, well, January. Until I remembered it was that dreaded day. It comes once a month, regular as clockwork. Yes, the day I have to shuffle off to the chemist to pick up my prescription.
I made the fatal error of popping to the supermarket first, so I went to the chemist with two bottles of wine rattling in my shopping bag (they were presents for people, honest).
Setting down the incriminating bag at my feet, oh-so-casually draping my newspaper over the top, I queued up. I was third in line and there were a couple of people waiting around for their prescriptions, staring at us with bored disinterest.
An aggressive-looking woman, arms folded in a threatening manner, was called. The chemist handed over a carrier bag full of boxes of medicine and she smiled triumphantly before leaving. Yes, and? It’s not a competition, love, jog on.
I quickly grabbed a bottle of shower gel on offer so it didn’t actually look like I was waiting for medicine and finally it was my turn. I whispered my name to the chemist. ‘Didn’t catch that, sorry’. I said it a bit louder, cheeks burning. ‘Prescription you say?’ He wandered off, rifled through a huge drawer and held it up. ‘Address?’ I gave it. ‘Repeat the prescription?’ ‘Yes, please’. I signed my name and fled, the wine bottles rattling even louder as they banged against the glass door.
Why do I feel so furtive? Maybe it’s because I’ve never really been on any medication until MS came along. Maybe it’s because I’m on the younger side of people who pick up three different medicines each month. But mostly I think it’s because the medicines I take are not specifically for MS, they can treat several generic conditions and the three of them together could sum up a pretty tragic picture.
I always want to drop into conversation, ‘Oh, no, I’m not x,y or z, I’ve actually got MS.’ Not that I want to show off, I’d just prefer not to be taken for a malingerer. Anyway, I went back home, relieved it’s all over for another month, tripped over the cat and burst out laughing. Definitely the best medicine.
Toilet Humour
I spent most of yesterday sitting on a toilet in work. Ok, it was unplumbed, yet strangely comfortable. We are in the middle of fitting two bathrooms and ran into some problems, so a lot of the time we were hanging around discussing how best to fit the pipes.
This was quite handy as I had yet another one of those out-of-the-blue MS crashing waves of tiredness and wasn’t fit for much else, bar a gentle spot of sweeping up, resting my elbows now and again on the handle, head to one side.
Typically, I was full of energy the day before, and was whizzing round the shops with my mum, stocking up on sausages, body spray (an absolute essential for building work) and printer ink.
And that’s the really annoying thing about MS – the sheer unpredictability of it. It’s just so darned inconsiderate. MS has appalling manners. There’s no point booking anything in advance as you haven’t got the foggiest clue how you’ll feel on the day. My most common phrase is, ‘can I let you know?’
If I arrange to meet a friend for coffee, I pray the night before that I will wake up with some energy. I can’t remember the last time I went out with friends on a Friday night and at our age, it’s so hard to do anything spontaneously, when I do have the energy – babysitting, work, lack of money, can’t be bothered, etc.
So yesterday, the wave hit me around midday and I could pretty much write off the rest the day. I know the score. Get home, rustle up some dinner for The Teenager, quickly wash the dishes and lie on the sofa for the evening. Boring. If I’m lucky, I’ll have a few magic pockets of energy where I’ll suddenly leap from the sofa and dash round the house doing as much as possible in the least amount of time before crashing again.
Anyway, this job should be wrapped up by early next week, then it’s on to the next one. Variety is the spice of life, and at least I now know how to plumb a toilet….
Help! Do I Need a Wantologist?
Thanks to MS, my life-plan is all up in the air right now, so what I need is a ‘wantologist’, right? Yup, the latest craze from California is to get yourself a wantologist, an offshoot of a life-coach. Originally devised to help business managers make purchasing decisions, could this be the Holy Grail I am seeking?
Apparently, the first step is to think about what you want, then decide if you are ‘floating’ or ‘navigating’ towards your goal. Seriously? After that, you have to describe how you would feel once you have what you want. People pay for this?
Ok, so assuming I find a wantologist in the Yellow Pages, can you imagine how my initial session would go?
‘Right dear, mind the incense stick, oh and watch out for the candle. Now, sit down, clear your mind and breathe deeply. Concentrate on what you really, really want. Can you tell me?’
‘A cure for multiple sclerosis, please’.
‘Oh. How would you feel if you had a cure for multiple sclerosis?’
‘Um, healthy?’
‘And how can you attain this goal?’
‘Raise money from bake-sales to help fund vital research?’
‘And how would that make you feeeeel?’
‘Happy?’
‘Are you floating towards that goal or navigating?’
‘Well, I’m feeling pretty floaty on that incense’.
‘Ok. You go away and make some cakes; navigate towards that goal! You have the inner strength! You can do it! Now, that’ll be £95 please. We take all cards’.
I have ‘wantology’ conversations with my friends and family all the time. We all do! I’ll chat to my friends about what job I want, which pair of shoes I should buy, which shade of lippy suits me best. Through chats over coffee or wine, we put the world to rights and sort out thorny issues, they help clarify the jumble in my mind. I don’t need an expert to replace that.
Mind you, with my sticky job situation at the moment, I’m tempted to take the two-day (yes, really!) training course and set myself up as one. But how would it make me feel? Shall I float or navigate?
My Brain Hurts
The Teenager is back after eight days away and I have had a terrible headache all weekend. Hey, I’m not saying the two are connected though (honest). The house is filled with noise, dirty laundry and mysteriously migrating food and it feels like home again.
I’ve had a searing band of pain round my head and my eyes hurt – it feels like my brain is in a blender. I don’t normally have headaches but I’m not sure if it’s MS-related. You know what MSers are like, any new symptom and we automatically think it’s to do with MS. We kind of forget we got aches and pains anyway, before MS reared its ugly head.
So it was a weekend of two halves. On Saturday morning, I worked with the builder – yet another 7am start, eek – putting up the world’s most complicated shower screen. All I had to do was sit on the edge of the bath and try to work out the book of instructions and what each of the 200-plus parts were for. Mission accomplished, I picked up The Teenager and took him home to be joyfully reunited with his Playstation.
On Sunday, I woke with my head throbbing in pain. Luckily, The Teenager had a lift to his rugby match, which is just as well as apparently it ended in noisy carnage. Our team was winning, which the opposite team didn’t like very much so they started throwing punches at our lot. Then the parents got involved and the match was suspended. The Teenager arrived home covered in mud from head to toe, face shining with drama and triumph.
The whole of Sunday, after quick dash to the shops for newspapers and a Snickers bar to cheer myself up, I lay on the sofa. I dozed off, woke up, watched telly. When I moved my head, it hurt. Every hour, I gave myself five minutes to dash around sorting out the laundry, tidying up, washing up, then it was back to the sofa. More boring than I can describe. MS is possibly one of the most boring illnesses ever.
Anyone else out there have headaches and MS? Anyone else find MS utterly boring? If so, please let me know how you manage…..