May is one of those months that everybody likes. In May the weather takes a definite turn towards Summer, plants and flowers start growing, BBQs are dusted off, people spend more time outdoors and soak up a bit of well-earned sunshine and warmth.
I thought I'd take the opportunity to give a brief update on what's going on with me, and where life is currently going, especially for those of you that were concerned by my post back in February, where I shared that there were problems with the health of my kidneys being investigated, but I've not mentioned them since!
Let's do the health thing first. At the kidney biopsy in February I was told that I would hear the results at my next appointment in three weeks time, unless the results were urgent. I got a phone-call from the Renal specialist three days later. It turns out I have a type of Vasculitis called microscopic polyangiitis. Vasulitis is where the immune system decides to start attacking the blood vessels. There are lots of different varieties, and microscopic polyangiitis involves the blood vessels in the kidneys, and occasionally the lungs. So my immune system had started attacking my kidneys, which were inflamed. They wanted to start treatment right away. The treatment involves starting on a hefty whack of steroids, which they taper down quite quickly because of the side-effects, and also giving a low-dose chemotherapy type drug infusion every three weeks for ten cycles. Both of these treatments can have lots of side-effects so they keep a close eye on you, and also give lots of other drugs to try to reduce the side-effects as much as possible. It means that I trek up to Birmingham every three weeks for the infusion, and again in between for a clinic visit, and also have a blood test here in Hereford mid-cycle. Its a bit of a long-term illness - it should be in remission by the end of the ten cycles in the Summer, after which the treatment reduces to a maintenance dose. I'm not sure how long that goes on for, but I think they monitor things and making sure there are no relapses over a couple of years and then gradually try withdrawing the treatment. I've now had four treatments with the cyclophosphomide infusion, and am due my fifth on Tuesday, and the steroid dose has been reduced from 60mg per day to 20mg over the course of the treatment so far.
I have to say there have been moments where the whole thing has been a bit overwhelming. I mean, I'm 37 and previously healthy, reluctant even to take paracetamol most of the time. Then suddenly I have this long-term illness and am chucking back so many tablets that I think I'm rattling. Having seen some of the other folks at the clinics and in the infusion suite though, I think I've had it pretty easy. First of all, thanks to the vigilance of my optician and the competence of the doctors, my illness was picked up and diagnosed very quickly. I had already seen the specialist before I even felt unwell! I'm also getting off fairly lightly with the treatments. I get the impression that others can react pretty badly to it, or get many more side-effects. I feel a little fuzzy, shaky and very tired the evening and next day after a cyclo infusion, and am getting other side-effects, but nothing serious, and am still managing to work full time. My side-effects have included sleepless nights - I think that's the steroids. I've been waking very early in the morning (like between 2 and 4am) and have often been up by 4.30am - also leading to me being pretty grumpy by the time I pick the children up from school at 5.30pm. Luckily as the steroid dose has been reduced, this seems to be an improving situation. I get puffy legs as the day wears on, the skin on my hands has gone papery and thin, I've got spotty, I've got a fat face, I've had bouts of nausea (better now, as they changed one of the drugs) and I have AN ENORMOUS APPETITE! Seriously, I'm hungry all the time. I lost quite a bit of weight in the few weeks before the biopsy, but have now put it all back on. One of my missions for May (and June, July, August etc), is now that the steroid dose is coming down, I've really got to get in control of my eating and try to shift some of the weight back off. I can't do much about the vasculitis, but I can make sure that the rest of my lifestyle is healthy.
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| my fat face today out walking the dog. |
My family is lovely. They've had a bit of a hard time over the last few months, as I've been tired and grumpy. To be honest, Bug doesn't seem to notice much of the time, but then she surprises me by making me a card asking "ar you ok?". C gets more worried, and when he can see that I'm tired or feeling unwell, gives me big cuddles. I've been trying my best to make sure the house is still clean and tidy, the dog is walked, we have clean clothes and food at the right times, but there have been times when all I've managed to do when I get home from work is curl up on the sofa, and leave it all to Hubby. Despite my mood swings and fluctuating energy levels, he has kept going with everything. The whole thing does seem to have sparked a bit of "living for the moment", and we've fulfilled a couple of dreams by going on holiday to Venice, and ordering a brand-new VW Camper. Hopefully we'll keep on with that - I like that we're getting on with living right now.
We like Herefordshire, it's a beautiful place to live. We're still hoping to sell the house in Scotland (sooner rather than later) but currently have tenants in there and are renting down here. We can't wait to finally buy a house here and make it into our own home - because we know we aren't planning to stay here we aren't doing anything that would need undoing at the end of the tenancy, it feels very temporary. I'm pretty sure we'll be in this place at least until the end of the Summer, so another thing to do in May will be to get some veggies and flowers in the garden. Last year I got a few tubs and pots around the place, and I hope to make use of some pallets and extend that this year, allowing space for the children to have their own planting area too if possible. We can either take them with us or bin them when we finally do move.
Work - I'm really enjoying being back at work, though obviously with all the trips to doctors and hospital, blood tests and feeling unwell or tired it hasn't all been easy. I'm currently covering a maternity leave at a tiny little school in rural Herefordshire teaching Reception Class. It was a challenging start, as there were two classes sharing one classroom, which was slightly chaotic to say the least! Things are now looking much better, as I have a huge classroom, which is beginning to look more like the way a Reception Classroom is supposed to look (though getting resources ordered via our "umbrella" school is unbelievably slow - we are definitely the poor dependent!). In professional terms I am really enjoying the challenge of teaching a different age-range. The LEA are coming in to moderate my EYFS judgements on the little lovelies at the end of May, and while I'm hoping that I'll learn from the experience, I'm also hoping that it won't be too much of a learning curve and that they'll agree with most of my judgements. I'm feeling pretty good because I've already done a lot of the evidence gathering and preparation work ready for that, and by doing so, it will also put me ahead of the game when it comes to writing EYFS Profiles and school reports towards the end of term.
In the meantime, I'm also applying for jobs for September. Watch this space to see how I get on with that!
Everything else - writing, crafts, model railway, Scouting, making stuff - It will come as no surprise having read all the above, that my writing, my crafting, the model railway (which came out of storage a couple of months ago), and all the other projects with which I like to fill my life, have taken a definite back seat over the last few months. I am still required to make things by my demanding daughter, and do my best to fulfil her requests, but am also trying to teach her that with many demands on my time, I need to prioritise, and making a cat costume is lower on the priority list than filling in a job application! I hope to get back to all these things of course, but just now getting fit and healthy, spending time with the family and keeping up at work are my three top priorities - in that order.
What are you up to in your life at the moment? How are you getting on with your life dreams and priorities?
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