Friday, 31 August 2012

Things I learnt - August 2012

A spoken comment is different when written down.
My humour is sometimes a bit unique. Something that I think is funny isn’t always amusing to others, but that does depend on who you are addressing and whether they know you or not. If I could speak the exact same words with that person in front of me so they could read my facial expressions and gestures, I probably wouldn’t cause offence. 

Wednesday, 22 August 2012

Not rocket science

Since I last wrote, I have been: taking more new medication, losing weight, knitting lots, making decisions, researching and collating tattoo ideas, working, pushing myself a bit too far in London for the last few days of the Olympics, and enjoying some happier days. It's been a long time since I've felt like I wanted to sit down and write something, which is positive in many ways as it means I have been feeling better and not spending so much time resting. It's negative in the fact that I didn't want to let the habit of writing slip!

I feel like I have had so much on my plate for such a long time. But some things have got me to the point where I have finally realised that what will be, will be. I can only deal with one thing at a time, and as long as not dealing with something doesn't land us in hot water with bills, banks or other responsibilities, it can wait. So, worrying about everything that I don't do because of feeling so ill has stopped. Worrying about what other people will think if I don't do what they want me to do has stopped. Worrying about what other people are doing with their lives has stopped. Subsequently, I feel less stressed, and therefore less ill. Not rocket science I know, but it's not something that I could have forced upon myself any sooner. And, if people don't like it, well...

My last appointment with my rheumatologist was positive. We reviewed my notes about my trial of steroid medication and reviewed the pictures I took of my skin and joints after the trial finished. He agreed that my current medication was not doing enough to suppress my immune system and kick the Lupus symptoms into remission. So, I am now on a low dose (10mg) of Prednisolone each day, and will probably be on it long term. This is a lot lower than the trial, but we want to find the lowest possible dose, and then stick to that long term. We will increase or decrease by 1mg per month until we get the right balance. I do have reservations about long term steroid use, but it looks a lot easier to manage the effects of the steroids than the effects of lupus on my kidneys, abdominal lining and skin. He's arranged some further bone density tests so we can monitor any osteoporosis risks as my bones are already weaker due to the vitamin D deficiency. Yet more supplements have been added to the pile of pills and potions, but I am now starting to feel the improvement.

Within 10 days of starting the steroids, I succumbed to a horrible virus which meant another 10 days off work and most of that time was spent in bed. I felt so unwell, and so emotional. It is so hard to explain the roller-coaster of  feeling well and ill, and just not seeing a light at the end of the tunnel. I just felt so beaten again after thinking I was making progress.

I'm over the worst now, and managed my working hours (currently 16 hours a week) for the last 2 weeks - a big achievement for me, even if it doesn't sound like much. I still have pain in my legs, ankles and feet, but almost all of my chest, shoulder and neck pain has gone. I have very little abdominal pain, but this does return if I do too much in the day. I am only waking up once or twice a night now, and whilst my skin is not perfect, it is considerably better than 6 weeks ago. I paid the price for overdoing some days out in London for the last few days of the Olympics, getting back to my sisters flat and near on collapsing due to the pain in my legs and feet. I just hate to give in to these things, but this was definitely a turning point. I am now resting before I feel the need to, and I am pacing all of my activities. As I said above, as long as its not life or mortgage threatening, it will get done when it gets done.

I've been trying to get Christmas knitting started, and bust some of my wool stash which is getting over the top again. I also have some friends expecting babies at Christmas too, so they have put orders in. I need to pull my finger out!

I'm really pleased with a cowl I made called Burrowed Time - a modification to a pattern on Ravelry. I love experimenting with different yarns and textures. I know if Grandma was alive she would probably tell me that I should concentrate on perfecting my skills rather than fiddling with things - but I suppose I am learning by fiddling! I still haven't finished Wingspan. I am almost there, I just need that last bit of motivation.

I mustn't forget Wisp me away. This was a quick knit which I found really tedious, but as usual, the end result was worth it.

I've had lots of people suggest I should do something with my own designs, or set up a small on-line shop to sell some items. My dream would be to run a yarn shop and studio space - but I also worry then the hobby which I get so much enjoyment from becomes the day job, and to fall out of love with it because it becomes a slog would be sad. So, for now, I will stick to friends and family, and maybe a stall at a craft fair once in a while.

As for tattoos, I have two things that have really been on my mind for a long time, and by worrying less about other things, these two areas have come to the front of the queue. It really bothers me that I am not able to wear my wedding ring and engagement ring. They are a little too big for me now, but with the erratic nature of Lupus, my joints swell and I am scared of not being able to get the rings off if I do wear them - or that they might fall off and I wont notice! I also find it very painful on my skin to wear anything on my fingers for too long. I've tried wearing them on a chain but they feel too heavy. So, I will (when my immune system has settled) be getting a tattoo on my ring finger - probably down the inside, not in the style of a ring. I'm not sure of the design yet, but it will be along the lines of infinity and eternity - maybe some mathematical symbols or an equation.

The next set, which will take time and thought, is to cover one on my leg. I don't "regret" having it done, but the personal meaning to me at the time is now something that seems a million miles away. Every time I look at it, I see someone else, and I want to move on from that. I've spent many hours looking through images and ideas to try and put together some kind of ideas board. This will be a long-term project though, and considered for the right amount of time before jumping in.

Right, this is probably the dullest thing I have written for a while. Seeing as I am sure only my lovely Uncle Tony reads my blog, I suppose I have no need to apologise. I read so many great blogs and posts from different sites, especially Google+. I could sit for hours and read updates about the Curiosity rover, crafts, lives and antics, and I should try harder to write more creatively!

That's me done. Onto the next one.

Monday, 16 July 2012


According to the Oxford English Dictionary, a conundrum is a noun, meaning:
1.  A confusing and difficult problem or question
2. A question asked for amusement, typically one with a pun in its answer; a riddle

Over the last 12 days, I have been on a "reducing dose" course of steroids to try and get my immune system under control, and to help give my consultant some clues as to what treatment is going to work best in keeping the Lupus symptoms I am experiencing to a minimum. I've had lots of ups and downs during the 12 days, and one of the really down days resulted in me writing down a set of bullet points on my knitting notepad, when I couldn't get my brain or body to work at anything, let alone knit!

Thursday, 28 June 2012

A social network?

I read a blog this morning which caught my eye in Google+, and it has been in my head ever since. It was titled "Goodbye Facebook" and I found the words echoing some of my feelings.

I have for a long time felt as if I use Facebook to lurk, or to see whats going on. I certainly don't use it as a "social network", as it isn't very "sociable". How many of the friends in your list would recognise you in the street and stop to talk to you? How many would give you a call, just for a catch up? One key thing jumped out from the blog and comments - birthday reminders. Do I wish people a happy birthday on FB because we are friends - in the true sense of the word?

Tuesday, 26 June 2012


I've been back at work for just over a week now. With the support of my employer and healthcare provider, we have put together a plan to work reduced hours for a few months, and gradually build in more hours until I am at a point where my health situation doesn't interfere with my work, and vice versa. I never really realised (or admitted to myself) quite how badly fatigue was affecting me personally as well as in my job. I now find myself exhausted after my 4 hours are done at the office, and this has made me realise a few things. I really do need to make some changes and get some things straight otherwise I will never be able to go back to work full time, which is daunting for many reasons.

Fatigue and joint pain is also having a massive impact on my ability to do the crafts that I had started to turn to when I was starting to struggle with the active things I enjoyed so much before my Lupus diagnosis. This is something that causes me much sadness at the moment. I know its not famine, war or poverty, but it is relative to me and my life, and to feel the things I enjoy slipping away from me is hard to deal with.

Tuesday, 12 June 2012

Starting somewhere

So, I've tried to complete a blog before, without much success. My attention span is poor, and I always find myself too busy, too tired, something else more important. Story of my life!

I'm now being forced to slow down and get a bit of focus. I've recently been diagnosed with Lupus. I'm not sure yet how I feel about it. Positive in many ways as it now means I have something that can be treated, acted upon, a label for something that has been hanging over me for many years. I'm also very worried. My symptoms are probably very mild compared to other people with Lupus. But I feel like poo, on a good day. I can't contemplate getting worse.