Copied from Jenn @ Project Jennifer. I love reading and filling out things like this, at school there was a craze for a few months where people would post these up on MySpace all the time. Not about illness, obviously. 1. The illness I live with is: seronegative inflammatory arthritis! so basically no one really knows for sure 2. I was diagnosed with it in the year: 2009 3. But I had symptoms since: 2009, i was lucky to be diagnosed straight away 4. The biggest adjustment I’ve had to make is: it was difficult to get used to the idea that there was something wrong with me, after being incredibly healthy all my life 5. Most people assume: that there's no way i could have an old person's disease 6. The hardest part about mornings are: oh i just hate mornings, always been a night owl!! 7. My favorite medical TV show is: i dont really watch them but used to love ER when i was younger. 8. A gadget I couldn’t live without is: erm..in arthritis terms.. my laptop? without it i wouldn't have found the support i needed during my diagnosis 9. The hardest part about nights are: i like the night time! 10. Meds: 2 pills a day 11. Regarding alternative treatments: I believe in eating well and exercise and sleep. Maybe other things do work but I'm not disciplined enough to try elimination diets or things like that. If it works for you then go for it though :) 13. Regarding working and career: My work is very supportive, and luckily my condition rarely affects my work for now 14. People would be surprised to know: i guess people would be surprised to know i have a serious long term illness. i look like im in the prime of life ;) 15. The hardest thing to accept about my new reality has been: that the illness is progressive in most cases. i still think i'm a bit in denial about that part 16. Something I never thought I could do with my illness that I did was: erm.. ive done 2 long distance bike rides since my diagnosis, the most physically demanding thing i've done in my whole life. i think i did it to prove something to myself 17. The commercials about my illness: we dont have those in the UK 18. Something I really miss doing since I was diagnosed is: just this wonderful freedom and invincibility of youth where you think you can do anything and there won't be any consequences. i still do stupid things all the time but there's always that worry in the back of my mind that i might push myself into a flare. also i miss not taking medication, it's such a pain even though i'm lucky and take very little 19. It was really hard to have to give up: oh actually i have just given up something - going on arthritis message boards and wasting hours reading about my condition. I was getting obsessed. now im just sticking to the blogs :) 20. A new hobby I have taken up since my diagnosis is: ive got really into cycling, love it! 21. If I could have one day of feeling normal again I would: i'm lucky in that i feel normal most days now that my arthritis has settled down. every day i thank my lucky stars that i can walk and work and enjoy myself. i try to take every opportunity and live in the moment. i worry less about money and saving. i just try and enjoy myself 22. My illness has taught me: that i am quite resilient 23. One thing people say that gets under my skin is: erm, i dont know. what annoys me a little is that none of my friends really ask me about my illness at all anymore. not that i want them to ask me all the time but i think they are scared they might upset me or just assume im all better. but then i get annoyed when people say/ask stupid questions too so maybe it's best not to say anything at all haha 24. But I love it when people: listen 25. My favorite motto, scripture, quote that gets me through tough times is: the trick is to keep breathing 26. When someone is diagnosed I’d like to tell them: i'm not sure. i think i'd just listen. that's what my friends did with me, i screamed and cried and ranted and raved at them all for a few months and got it all out of my system until there was nothing more to cry about and then i just had to get on with it as best i could. 27. Something that has surprised me about living with an illness is: that so many other people live with invisible illnesses. having something in common with them has opened up my eyes to what people go through on a day to day basis and given me much more sympathy and understanding. i had no idea before, ive discovered a whole new world. 28. The nicest thing someone did for me when I wasn’t feeling well was: come to the hospital with me and kept me company when i had a steroid injection into my finger. i was pretty scared but my friend put me at ease and distracted me 29. I’m involved with Invisible Illness Week because: it's good to talk about things 30. The fact that you read this list makes me feel: stalked? ha. no just kidding. thanks for reading my ramblings

Back!

Hello my little forgotten blog! I have the internet at home again, hooray!!! I did my bike ride yesterday. In a sort of mini hurricane that's come over our way from the east coast of america. Obviously nowhere nearly as bad as it was for those guys but just lots of strong winds and sideways rain. Not the best cycling weather!!! Almost died. Not really. But it was tough. I've been sitting on my couch all day today in my new SNUGGIE. Does anyone have one? They're so ridiculous, mine's zebra print and i LOVE it. I wear it over my dressing gown, and i look like a total idiot but I'm so warm!! Ok that's all I have to say right now. Will do a proper post soon. Hope everyone's as well as can be!

update

It feels like so long since my last update! I've moved house and don't have the internet connected yet so for the first time in years i'm free of my web addiction! I've had a tough couple of months with moving, lots of things happening at work and also my great aunt passed away 3 weeks ago. It's been a busy and emotional time, and my stress levels hit the ceiling at some points. But i'm happy to say this week I feel back in control and like i've reached some calm waters. Feeling positive and generally good now that all the stress is over. I am also doing super with my arthritis, and training for my 50 mile bike ride in september. I'll be getting internet installed in a few weeks so will catch up with everything then. Hope you're keeping well!

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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!