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I've neglected my blog for a wee while. Things at home are not going so well. My great aunt continues to deteriorate and the burden on my mum is huge. She works full time then goes home to be a full time carer and maybe gets a few hours of disturbed sleep per night. I think she's at breaking point and I just don't know what to do to help. I've been trying to speak to social services but there's no quick and easy solution in these cases. I think they have discussed a hospice, but there are no places as yet so for now she will be staying at my mother's house. It's really terrible. I don't really know what to say or do. Just have to keep strong and be there for my mum. I know these dark times will pass, as they always do, I just hope she can keep strong and not fall ill herself.

Otherwise I'm well. I was in London all of last week and did a lot of walking, with no complaints from Mr Right foot which was a lovely surprise. At least the arthritis is taking a back seat these days so that I have the strength to deal with these new challenges life has thrown up.

I'm also moving house this weekend and haven't packed a single thing. I suspect an all-nighter will be happening on Friday.

I'm checking in with all your blogs and sorry if I've not been commenting as much with all the things going on here. Thinking of you all especially those having flares just now and wishing you only good things. Also missing some people's blog updates, Laurie, are you ok?? Take it easy for now folks..

Looking for inspiration

I've been struggling to think of what to write about lately. I can't think of anything to say about 'me'. Everything is fine, my job is good, my social life is great and my RA is only an annoying buzz in the background. I don't go back to the rheumatologist until December so unless something happens I probably won't be writing about it much. I could write a long whiny post about my slightly swollen thumb tendon which has been annoying me for the past week but I doubt anyone would want to read about that.

So instead, I'm going to write a post about someone who's very dear to me and whose fate lies heavy on my heart at the moment.

My great aunt is 86 years old. She is the oldest living member of my family (which is very very small) and unfortunately she's not long for this world. In the last year her health has deteriorated horribly and she's now in and out of hospital and unable to do much for herself. She's living at my mother's house now who has to take care of her. It kind of breaks my heart. Especially since I know what she used to be like.

She was a very successful architect, and travelled the world. She built schools in North Africa and lived in Paris. She speaks 4 languages, including Arabic learnt from her days in Tunisia and Algeria. She married in the 60s but eventually divorced and had no children. My mum was her 'child', and they were great pals. She took my mum travelling with her in the 70s and 80s. My mum remembers my great aunt at her greatest so it's that much harder for her to see her now. I worry about my mother and the strain this is taking on her but there isn't much I can do apart from listen.

My own memories of my aunt in her younger days are many, but they are a child's memories. Her picking me up from nursery school, looking after me on many sunny afternoons. Going round to her house was always an exciting event as I looked forward to exploring the strange objects she'd brought back from abroad and decorated her house with. She was also one of my favourite playmates, despite her age. We used to build forts out of the sofa cushions in the living room. She satisfied my every childish whim because I was her only 'grandchild', in effect. The past few years her mind had started to go a bit, so she wasn't the aunt of my childhood but she was still a lovely old dear who I could have a nice wee chat with and who told me about her travels and would rejoice in my various achievements at university and beyond. I'll miss her dearly.

I'm trying not to feel too sorry for my great aunt. She's had a brilliant life, seen the world and until this past year or two she's been in great health. It's just really difficult to watch someone deteriorate and know that there's nothing you can do. At least I can take some comfort in the fact that she has her family around her in her final months and that has to mean something.

Old age is no joke. I've known a few people who've died but most have died suddenly. This drawn out long process of 'shutting down' of the body and the mind is horrible to watch. It really breaks my heart. It makes me want to (eventually, when I'm old) die of a heart attack or something, at least then my loved ones won't have to go through this. Maybe I should start eating more fried food.... Just kidding obviously.

It sounds terrible but I dread going to my mum's to visit at the moment. I want to forget this stage once she's gone and just remember the woman she used to be. Is that possible?

Secret illnesses

I was surprised today to find out that a boy in my office has Crohn's disease. He's been off because he's recently started remicade infusions and he's got an infection. It really knocked me sideways how hidden these things can be. He's never off sick really so I wouldn't have ever known only I've been working on a project with his girlfriend and she was really concerned about him this morning and kind of let it slip he was on immunosupressants which spiked my interest. We then got chatting about stuff and it turns out her dad has pretty severe RA as well and retired early because of it. She had no idea I had RA so it was quite weird to discover all these things about each other having worked together for years.

I wonder how many people at my work are affected/know someone who is affected by a 'secret' auto immune disease. Probably more than I thought!

Time flies

It's been quite a few weeks since I've posted and that's because today is the first day for so long that I've had to myself. I've been having a crazy time of it lately, with a friend visiting from Canada, then a holiday to Portugal (which was delightful!), then a few freelance photography and video jobs on top of my full time job. But today and tomorrow I have 2 days of alone time bliss before going back to work on Wednesday.

Apart form a couple of minor things here and there my arthritis is behaving. My feet held up really well this weekend when I was working as a camera operator at an outdoor music festival for 3 days. I was pleasantly surprised by how well my body dealt with the constant standing and heavy physical activity. I used to film music festivals every summer but I chose not to do them last year because of the arthritis stuff and this has been my first one since my diagnosis. Thankfully it went well so that's another HA! to RA.

On a negative note, the agency with which we rent our flat has illegally closed down and stolen our deposits and last month's rent. Our landlord isn't at fault and he's lost money too but we've each lost out on a few hundred pounds. So we're trying to flat hunt and save up the lost money for a deposit on a new place as we were wanting to move anyway. Really annoying.. but that's life, money is money and can be recovered. Not as important as our health..or so I keep reminding myself when I get angry about it! :)

Hope you're all keeping well!

Good news

I had my check up this morning, and the good news is that my last xrays didn't show any damage to my hands and feet. So considering the fact I've generally been feeling good since the new year my doctor's happy to keep me on just the hydroxychloroquine. Dodged the methotrexate again!! They're changing my check up interval from 3 to 6 months too. Seems a bit weird that I won't be going back for so long, but I have my doctor's number and she said to give her a ring if anything comes up or if I have a flare and need an injection. And can I just say again how much I like my doctor, she's so nice and thoughtful. Overall, great news. On the downside, I think the apocalypse is a couple of days late but is definitely starting right now in Scotland. We have CRAZY strong winds, branches are blowing off trees and stuff. Plus apparently another volcano's erupted in Iceland and flights might be disrupted. This is VERY bad news as my friend from Canada's flying over a week tomorrow and then 2 weeks tomorrow we're meant to be going to Portugal!!!!!!!!!!!!!!!!!!!! I'm trying not to panic. I'm sure everything will go as planned. Stupid volcano. Doesn't it know I need to go lie in the sun???

London underground

Having just been in London with work, I was once again struck by something that I think about often. I had finished the thing I was filming and had about 3 hours to get myself to the airport. I was in central London and needed to get the underground from Leicester Square to the train station at Victoria and then a train to the actual airport. It sounds relatively simple, until you add in the fact that it was rush hour. Trust me, the London underground is NOT somewhere you want to be during rush hour, especially if you have arthritis.

I got on the wrong tube, I then had to double back on myself and got stuck in a delay. Then I had to change lines a few times and wait in massive queues. All in all it took me an hour to travel what should have been 3 stops. There were people rushing and pushing all around, it was incredibly hot and stuffy and even though I grabbed a seat for a wee bit, most of the time I was standing or walking down long corridors and up and down massive staircases.

During this whole time I was thinking "My god, this is terrible. How in the world is a disabled person supposed to travel like this?" I feel very lucky that at the moment my mobility is not restricted and the entire ordeal only resulted in a sore foot. However, there is the possibility that one day I may indeed need extra help getting around and it is in situations like yesterdays that I really appreciate how difficult, if not impossible, it must be for people with more severe mobility problems to get from A to B in day to day situations. Because there isn't really an alternative to using the tube in London. Yes, I suppose you could get a cab but that would cost you through the roof and yes, I suppose you could drive but if you're only in town for a business trip all the way from Scotland and you don't know where you're going then that's impossible too. Maybe there is some sort of disabled access on the tube which may be more practical during quiet times and maybe only gives access to certain stations but in rush hour with all those crowds pushing and pulling? Forget it! So what's a person meant to do? Not travel in rush hour and maybe not even be able to go to London for business at all.

So many things in life people take for granted, I wish it were that simple.

airport

Ah work trips. I half love and half hate them. Today I think I love them as I got a taxi straight from my house to the airport and when I arrive in london i'll have 5 hours free before work to recover from the trip. Lunch on the company in covent garden you say? Oh ok then! Life is good. :-)

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