Tag Archives: friends

Under Construction

I can think of a million and one lovely things to do on a beautiful, sunny Saturday. The Teenager is spending the day with his dad and I have the house, and time, to myself. There are museums to visit, shops to look round in and I need to pick up some books from the library. So why am I dressed in builders gear, thick gloves and Timberland boots, twirling a spirit level?

The good news is, I seem to be in remission at long last and a builder friend needs a bit of help with a last-minute job. It’s all quite technical, but it involves two steel lintels, lots of cement, nails and bits of wood. If the job isn’t done properly, the house will collapse in on itself. Or something.

My main roles are chief sweeper-upper and go-fetch-from-the-van person. After a long week of office work and study, it’s surprisingly good fun, this building malarky. I think I sometimes forget how satisfying it can be to do physical work, never more so than after months and months of mind-numbing exhaustion from a relapse. Suddenly, I feel refreshingly, alarmingly, gobsmackingly alive. My arms and legs seem to be behaving and I’m actually doing something useful.

Plus, I get coffee, breakfast, lunch and the odd Snickers bar thrown in – always a bonus. When I’m dropped home, I rush to the shower and it’s never been a nicer one. I’ve had an excellent day and I feel as if I’ve had a full-body workout – another bonus. So now, as I am about to lounge on my sofa for the rest of the evening, I kind of feel I deserve it.

Would I give up the day job though? Not a chance. My friend’s last job was fixing a roof. In torrential rain.

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Going out on a work night…

Ooh, I’m going out on a work night! I haven’t been out much at all since being diagnosed with multiple sclerosis, so this is BIG news. Fingers crossed, I’m well and truly in remission right now, so I’m going to make the most of it. Anyone with MS will know the dark spectre of a new relapse is always lurking round the corner, ready to pounce.

Up until very recently, just getting through the day and then falling headlong in the sofa used up all my energy. Having an evening out did not even cross my mind. Loading the washing machine was akin to running a marathon, cooking dinner from scratch was replaced by the microwave and life was scaled back to the absolute bare minimum needed to function.

So, decisions, decisions. What to wear? Can’t really wear the same as you’d wear on a Friday or Saturday night. Need to look as if I’ve just thrown together a chic outfit whilst juggling my oh-so busy life. The ‘no-effort, but somehow devastatingly fabulous’ look. A bit unstructured, but put-together. Does that make sense?

Right, now, got to think about what to have to drink. Soft drink? Maybe a bit unsophisticated. A mocktail? Bit naff. Wine? Well, I’m not driving, so possibly, but drinking so early in the week? Could be viewed as starting the weekend a little too early. Perhaps a spritzer then. Next, I have to think about how long to stay. We are meeting half six for seven (what does that even mean?). Should I turn up dead on half six and look a bit tragic or play it more mysterious by arriving just before seven?

Fleetingly, an image of me all cosied-up on the sofa with a good book pops into my mind. So tempting, so…..comforting and familiar. But, no, I am going out. And I can’t wait.

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It’s all me, me, me

Having multiple sclerosis, just how hard is it to show sympathy to people who are a little under the weather but who make a lot of noise about it? Has MS made me less compassionate, and do I somehow think no one else has the right to moan to me about their own troubles?

I only ask as two friends and The Teenager have recently been struck down by a bad cold. All three are male, so naturally ‘man flu’ has been mooted as a possibility, but to be fair, they do seem very poorly and I am trying to be sympathetic, listen attentively and give helpful suggestions. I care about these people and hate to see them ill.

But a teeny-tiny-little part of me thinks it’s a bit like expecting a poor person to empathise with a rich guy when his Porsche is in the garage for repairs. Sure, it’s an inconvenience, but it’s temporary and normal service will resume soon enough. I feel like saying, ‘ill? You’re ill? You want to see what ill is?’ How awful is that? What sort of person am I, to even think that?

I have bored my friends to tears over the last year, constantly dissecting symptoms to the nth degree, analysing lesions and spilling out my fears for the future. They have sat with me through a merry-go-round of appointments, held my hand during MRI’s and kept my glass of wine filled. So I feel very small-minded to begrudge them that little bit of extra attention and help when they need it. I have offered to drive 18 miles through the rain to bring supplies to one friend and have tucked The Teenager up in bed with a book and hot Lemsip. This is one battle the MS Monster won’t win. MS may be for life, but so are friends and family.

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The Loneliness of the Long-Term Diagnosis

Since being diagnosed with multiple sclerosis, I have never been surrounded by so many people (usually of the medical variety) yet felt so utterly alone. Bereft, cast out, somehow ‘other’. Just over a year ago, I was living a fairly normal life, doing fairly normal things. Sure, we all feel different at times, a bit lonely, a bit out of the loop, but with any luck, we soon gather ourselves together and re-join the masses.

Being stamped with an indefinite diagnosis however, permanently removes you from normal society, whether you like it or not. I felt a sense of shame ‘admitting’ my diagnosis to friends and family and was angered at their awkward, embarrassed reactions. Perhaps the slightly musty, old-fashioned image of MS does not help matters, despite it technically being a young person’s illness. Wheelchairs, catheters, trembling and paralysis were the most common words mentioned by my well-meaning friends along with the horror on their faces as they briefly considered the scenario of wheeling me to the park, wrapped in a tartan blanket to feed the ducks.

How to describe the aching loneliness of waking in the early hours of the morning, rigid with fear? Or the recurring thought: This. Cannot. Be. Happening. To. Me. But it is happening, and each new medicine, neurology appointment, MRI scan, blood test and flu jab add another thin layer separating the me now from the me then. My life was tossed up into the air one day last year and as it has fallen back down, there is a new order, a new symmetry and system to my life. Normal life must fit around appointments, fears and anxiety must be measured against reality and worst-case scenarios, and precautions taken.

I have lost friends. They simply peeled away, apologetically. I have made friends with the deep fears in my mind. I have faced up to them, stared them down, but still there is the gnawing loneliness. Or is it simply facing up to life as it really is? Unpredictable and utterly random.

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