Wednesday’s Child Is

 

ms-awareness-symptoms-jpeg

A little confused…

Anyone who knows me, or indeed reads this blog knows I love to sew. I wouldn’t have been running my own sewing business for the past 8 years if I didn’t.

I began sewing, first by hand then on a machine when I was about 7 or 8. My family has a history of seamstresses and haberdashers; so part of my inheritance has been an absolute tonne of fabric and findings – some pieces dating back to the start of the 20th Century at least. So it seemed kind of inevitable that my mum would teach me how to sew (I can also knit exciting things like scarves; but have never mastered crocheting). I even remember the first pair of trousers I tried to make for my doll – at that point I hadn’t figured out that trousers are more than just two tubes of fabric).

After flirting with the idea of fashion design in high school, it was an exhibition about the art of Star Wars in 2001 that solidified my plan to go learn costume design. Studying Theatre Costume Interpretation at college was amazing, both in terms of education and socialisation – my confidence with both sewing and friends grew by leaps and bounds.

In my third year of university I started thinking about what I could do afterwards: I needed a job, I needed to be an adult, and I needed a plan. So I decided to set up shop on Etsy, doing then what I did best: sewing.

So 8 years later, the business is still going and I’ve even managed to successfully graduate with a Masters in Creative Writing – focusing on another area of creativity I’ve loved for most of my life: writing.

But, as usually happens, my life has taken an unexpected turn: in early 2018 I was diagnosed with Relapsing Remitting Multiple Sclerosis.

Cue a year worth of Hospital Fun Times™

Multiple Sclerosis is generally an invisible disease, with most of the worst symptoms hidden from view.

For me, apart from one big known relapse I think I’ve been doing ok (of course my various pre-existing conditions make for fun complications – mostly my cerebral palsy)

So, unless I try to go out without crutches or my stick I do look like I’m very drunk – my balance was already pretty bad but now it’s kind of completely shot; do too much in one day (that even means doing too much at home) and I’m exhausted for hours later, or into the next day and I’m constantly living on about a 6/7 on the NHS universal pain scale.

The pain is a huge issue right now, and after trying different doses and prescriptions of pain meds I’ve finally received a referral to a pain clinic, where I can go next month.

But, probably the biggest symptom – and the cause of my most obvious and recent relapse is altered sensations. Not only do I have a vague numbness and pins & needles down both calves and my feet (to add to the uselessness of my cerebral palsy right foot) I also have major altered sensations in my hands.

You know the feeling you get when you’ve fallen asleep on your hand and it’s not quite woken up and started working again yet?

Well that’s what I face all the time. At first, it was only in my right hand – I thought maybe it was carpel tunnel syndrome or something similar (ok, this was in my non-dominant hand but never mind.)  But as it started spreading into my left hand and I got a letter from my neurologist regarding things found on a recent MRI I knew things weren’t quite right.

A quick side note

I do have a family history of MS, so when I got the letter mentioning inflammation on my MRI I had some inkling of what she was going to tell me. But let me make this clear: MS is NOT a genetic disease. You can be the only person in your family to have it, or one in a long line. This adds to the problems specialists and scientists have in understanding what causes MS and also one of the many reasons why there is no cure as yet.

Now comes a fun list

So back to my hands: not only do they feel numb and irritated all the time they also refuse to do what they’re told a lot of the time. This causes a number of problems:

  • I can no longer properly identify or judge fabrics by my fingertips; which makes shopping for orders and costumes quite difficult.
  • My ability to do fine needlework is reduced – I no longer have the delicacy or dexterity I once had. This makes hand sewing or (tragically*) hand beading enormously difficult.
  • My hands take longer to start working – and recover afterwards. I can decide to get up and dressed to start work at 9. I can decide to work late on an order. I can decide on a lot of things but my hands often have other ideas.
    • If you think again about falling asleep on your hands; whereas normally you should be back up and raring to go within 5 minutes (10 minutes at the very most) it can take a lot longer for my hands to start working the way I want and need them to; think upwards of half an hour.
    • Muscular fatigue means that once my hands are cramping and tired I have to stop and wait for hours – if not until the next day – until my hands are actually useful again.

All of these problems also have an impact on my writing – I now can’t hand write anything much. (This was hard to accept since I used to be able to write screeds and screeds of pages.) But, whereas I can start using voice to text software to write on my computer I can’t really do that with sewing, can I?

Other symptoms, not directly caused by the MS but definitely worse since my diagnosis are depression and anxiety. Both of which can add to feelings or fatigue or exhaustion.

What does this have to with my sewing?

I have had a hard time coming to terms with my diagnosis, and while I can pretty much get on with things; there are days that I can barely drag myself out of bed – when my pain is too much, when I’m too anxious or just too damn exhausted – not just fatigue but the exhaustion that just comes with existence.)

I want to be able to ignore everything; to go back to the person I was – I spent so much of my life defining myself by first sewing then writing so now that both are affected, how do I define myself?

First steps in a new direction

But, now I am starting (happily) to accept things, which has led to a decision: I’m going to stop sewing as much.

I’m not stopping for good. I can’t see a future where I don’t sew anything but I am going to slow down. So that means come June 2nd 2019 (I figured a good time to change things is my Etsy anniversary.) you’ll see a change to my Etsy shop and website. The larger costumes are going; along with some of the more complicated accessories.

But more literary inspired accessories are coming; more historical accessories and brand new wedding accessories are going to be introduced.

So I’m not stopping, just, adapting. I’m starting to start focusing more on my writing in general so it makes sense that my Etsy shop is going to head in that direction too. Think more Jane Austen cushions, Jane Eyre and Romantics inspired tote bags and even steampunk wedding items.

Multiple Sclerosis Awareness Week

This week April 22nd -28th is Multiple Sclerosis Awareness Week. So it seemed quite appropriate to announce this change this week. There is loads of really good info on both the MS Society website and the MS Trust – it’s worth reading up. It is in general a really hard disease to diagnose, so both websites have great resources for anyone going through the investigation or diagnosis process. Also, because it’s an invisible illness, you never know who might be dealing with it, so being aware of various symptoms and the fun trials and tribulations of living with the disease is, under everything else just really helpful in boosting your empathy and levels of understanding. It’s true, don’t judge a book by it’s cover because you never know what‘s going on behind the scenes.

Resources and other helpful things:

NHS 24

MS Trust

MS Society

A more helpful pain scale over at Hyperbole & A Half

And if you don’t have anyone to talk to and you just need a friendly ear:

The Samaritans are always there.

*I’ve loved beading details for years, from complicated pleated decoration for my 18th century silk ball gown right down to a simple flower for a 19th century reticule. I find it so difficult to accept this.

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