Hi ho

The suicide rate for people with ME is nearly seven times higher than the so-called normal population (see here).

For us living with ME this isn’t surprising. Right now I’d love a day where climbing the stairs doesn’t feel like climbing a mountain and this is every day, day in, day out.

So as you may have gathered I’m feeling pretty sh**e right now. 

About five years ago, after my diagnosis was confirmed by a consultant, who threw in fibromyalgia for good measure, I started on some pain meds. One of those was pregabalin (aka Lyrica), a medication that’s prescribed for anxiety and seizures but is also pretty good for pain. At one point I was on 600mg daily but after having reduced very slowly I took my last dose a few days ago. 

It’s a pretty nasty drug by some accounts; hailed as the new wonder drug, it has become apparent that it can be abused as well as being found to essentially cause brain damage (see here – the research refers to gabapentin, the precursor to pregabalin and it is believed that the research applies to both).

For me, it worked really well at first, but like most of these things, my soreness gradually returned and as I had also gained a whole heap of weight on it, I decided enough was enough and agreed with my GP to come off it. It’s not a drug you can stop abruptly, there’s the risk of seizures and some other pretty unpleasant unwanted effects if you do. I found a group in Facebook (here), followed their guidelines and reduced gradually without any major discomfort.

Now I’m off! I am feeling a bit rough now, but I don’t know if it’s due to this or it’s just a bad few days as it feels like exactly ME. 

So to cheer myself up here is a list of things I’m absolutely loving right now

1. Ok, let’s get the cheese over and done with: top of the list has to be Mr Weaving Heart. It’s rotten for him when I’m really unwell, I’m no fun as even speaking is pretty much ruled out and I’m a stubborn old thing too and will insist on doing stuff when I really should be letting him take care of it all. He’s even taken to dosing me with Smarties! I have a pill box thing, as I was getting into bother with forgetting whether or not I’d taken doses so he fills this every night, now with added chocolate as he thinks I deserve a treat. How lovely is that?

2. My knitting: I’m brioching. It’s fab and I adore the smooshy, squidgy fabric it makes. What helps is I’m using some merino/cashmere/nylon from Qing Fiber which must be the softest bounciest yarn ever. 

3. This stitching: it’s a design by Ink Circles called Damask Square, and is my ‘easy’ (ha!) cross stitching project. I’m sewing 2 over 2 on 28 count grey Irish linen, making it the same as 14 count Aida so nice and big but oh so elegant. The thread is overdyed cotton floss from Weeks Dyeworks in amber and is such a good contrast with the smokey coloured background. The texture, which I can’t really capture by photo, is perfect.

4. I’ve just finished reading an entire 16 book series by Robin Hobb; similar to Game of Thrones, it’s based in a fantasy world with medieval overtones and fabulous characters. You know how you fall in love with certain characters and storylines? Well I’m still in that, thinking about them and coming to terms with the fact that most of the rest of the world has no idea of the adventure I’ve just been on. For those of you in the know, Fitz, the Fool and Nighteyes have my heart forever.

5. Flapjack: I’m not up to eating much but could manage an entire bus load of this gorgeous sticky, sugary, oaty loveliness.

9 thoughts on “Hi ho

  1. Pia

    Love the smarties in the pill box, what a gem he is.

    I tried gabapentin once when I had nerve pain from a slipped disc two years ago. Had the worst migraine/hangover I’ve ever experienced, did nothing for my leg. Also tried Lyrica for anxiety about 6 years ago, again, had all the weird side effects from the bottom of the list such as slurred speach, inability to spell suddenly and whatnot. I preferred my terror. SSRI’s gave me suicide thoughts, despite that I did not want to die at all. NASTY DANGEROUS STUFF!!

    Hope you find some relief soon.

    1. weavingheart Post author

      It’s worrying they prescribe drugs that we don’t understand so freely. Thank you for reading x

  2. herbalsheila

    I admire your spirit! I am glad you are fighting back against this ME.

    I can understand about needing to wean yourself off of a prescribed medication. I was on Prozac for 9 years before I had to wean myself off. My doctor agreed with me. It was causing me to have insomnia and headaches, among other things. Though I’ll be the first to say it saved my life, it became useless in the end.

    I will keep you in my prayers, my dear. Hugs!

  3. rmwk100

    Oh, I’m so sorry you’re struggling along like this at present, and I do hope your withdrawal situation will improve. My neurologist recommended pre-gabalin 3 months ago, but I did the research, and decided against it, so I can see why you want to be free of it. I do hope this very rough patch will gradually pass, and that there will be some more active pleasures for you in the future. Please don’t hesitate to say if I can do anything to listen or support you. With love from Ruth XXXXX

  4. salpal1

    I adore that Mr. Weaving Heart is so creative with the pill boxes. 🙂 And that you are able to find comfort and solace in knitting and stitching. I do not love that you are in such pain so much of the time. I hope that you are able to hit on something that works without crazy side effects.


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