I know I don't need to explain, and I'm also aware that this post won't fit naturally into my blog profile of 'making stuff, making memories' but I feel like I should get it all out before I can start posting again. About fun stuff, and crafting, and kids. Which is next up on my agenda!
So...what happened last year? Apart from me still struggling to get my head around life with two kids - one super bright little boy with bags of energy, and one baby who refused to sleep, ever! I started to get aches and pains, and twinges in my joints at the start of the year. They were fleeting - coming on in the evening, bad during the night and gone in the morning - and coming a couple of times a month. I saw my Dr and an osteopath who both thought I was in good shape but perhaps breastfeeding a heavy baby and loose-ligaments were to blame. Nothing serious.
In August I got bitten by something in our local park - a small black fly I think but I couldn't be sure. Anyway, my ankle swelled up like an elephants. I couldn't walk, it was excruciating and I couldn't take enough painkillers to even touch the pain. I had antibiotics and after a week or so things calmed down a little and I could walk again. I rested, was given some mild steroids and all the pains stopped. Hooray!
Four weeks later I was at my running club and I got bitten again! Exactly the same over-reaction - hugely swollen, intense pain, not able to walk on it. The pains started up again in my joints but this time I noticed that my right foot was numb, and my left foot was tingly. I was given more antibiotics for the bite and a blood test was organised by my Dr.
The results came back with nothing particularly remarkable, although my rheumatoid count was one point higher than 'normal'. Fortunately, my GP was fastidious enough to recommend I see a rheumatologist - just in case. This Dr ran a whole range of blood tests, including for Lymes disease. Everything came back normal, however, there was a huge amount of ANCA positive antibodies in my blood, showing that my body was fighting something. It turns out it was fighting itself!
After a few more months of terrible pains in my joints, general lethargy and not being able to do very much at all, plus lots more tests, including a Sural Nerve biopsy, I was diagnosed with Vasculitis. A chronic auto-immune disease where the body attacks it's own blood vessels. A google search turned up some pretty scary information (I know, you're not meant to google, but we all do, right?!) but the good news for me was that I had been diagnosed really early on. Many people suffer for years and it is hard to diagnose as the symptoms are so (seemingly) random. By which time their bodies have suffered irreversible damage, often to major organs such as the lungs, kidneys and eyes. (There has been no organ involvement for me, apart from in the nerves in my feet.)
As you can imagine, this was a lot to take in. And the 'treatment' proposed was very serious too - 3 days of high dose intravenous steroids, followed by 8 weeks of more steroids in tablet form as well as a 3 month course of fortnightly chemotherapy (apparently it is used to treat many things, not just cancer.) And all this was a few days before Christmas. I didn't really have much of a decision to make though - I needed treatment, I needed to get better. And blimey! the first lot of steroids were like rocket fuel! I felt great, I had so much energy and I wasn't in any pain. I decorated the front room in two evenings :)
I'm now halfway through my treatment and I'm still feeling really good. The things I was really worried about haven't happened - I haven't lost any hair, my moods have remained even (in fact, I've felt like my old self and realised how little patience I'd had with the children when I was unwell), and I haven't swelled up (yet?) I have got a fuller face at the moment though (a common side effect of Prednisolone is a 'moon face') and my front teeth have become so sensitive I can't drink anything slightly cold without a straw. I do have to take a large cocktail of tablets every morning - most of them are drugs to protect me from the damaging effects of the steroids and the chemotherapy. But I have not had any pain since before Christmas! Fingers crossed that the second half of treatment goes well too.
If you follow me on Instagram (@thisiswiss) you'll have seen that I'm still running. This has been so important to me and thankfully my Dr's have totally understood and supported me. I need to run because I don't want to be beaten by this. I need to run because it makes me feel good, and that I am in control of my body. I need to run to get some headspace each week! But I realise that I need to listen to my body and rest too. This is a bit of a new concept for me, but I'm even enjoying this at the moment. I've started knitting again, I've been dreaming up new blog posts, and I've been going to bed earlier. It may be my age too, but it's lovely to get in bed before 10.30pm!
So that's me at the moment. I wasn't sure how this year was going to start, as we were all so worried about the diagnosis and the treatment but actually we are all feeling pretty positive right now. This is Wiss the business took a bit of back seat last year, as well as the blog as I just didn't have the energy to do anything, let alone sew, but now I'm hoping to do big things in 2016. Hopefully...watch this space!
Now if you've made it to the end of this mammoth post, I thank you for your time :) And I hope that you'll be back soon for some fun posts involving more crafting and less illness!
ohhhh !!!
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