2011

After work tomorrow I'm heading home to my mum's house for Christmas so I probably won't get another chance to write before the New Year. I guess I just wanted to sum up the last 12 months and reflect on how amazing this year has been. Even though there were hard times, with my great aunt passing away in July, for the most part it's been the best year I've had in a while. I got a promotion and a pay rise in work as well as a big bonus which got me out of debt. I travelled to Paris in February, Portugal in June and Iceland and Berlin in October/Nov all of which were incredible experiences. My arthritis has been sleepy all year and I feel healthy and strong. I've only been to the hospital twice this year for my two check ups and been in there for a total of about 15 minutes. What a contrast to last year when I was getting meds sorted and had to be in there every few weeks!! Also, for the first time since my diagnosis, I feel free from RA in my head. Thoughts about my future with illness don't fill my every waking moment. It's wonderful and I feel so lucky to feel so well in body and in spirit. Last but not least, I have met someone wonderful and we've been going out now for 3 months. It's still very new but I'm very happy and looking forward to the New Year together and getting to know each other more. Basically...I AM EXTREMELY HAPPY WITH LIFE. I am a lucky girl. I wish you all a great Christmas full of love, and hope for a better 2012 for us all.

Check up

I went for my 6 monthly check up this week at the hospital. I didn't see my usual doctor but I saw the consultant this time, only the second time I've met her. She's really nice and remembered me from before. There wasn't really much to say, although I chuckled when she asked me: 'So, do you think the hydroxychloroquine is helping?'. Haha, surely they're the ones that are meant to tell me that? I said I didn't know and she laughed and said 'that's the million pound question isn't it? we sometimes never know if it's the drugs that help or if you would've got better without them.' But she then said to me that she normally likes to have people symptom free for a year before she lets them reduce dosages. To this I replied that I wasn't worried about taking my drugs and I wouldn't want to stop, unless I was totally symptom free (which I'm not) for a good 3-4 years. To be honest I doubt I'll ever get to that point, and I am not aiming or even daring to hope to be drug free. I'm a realist. But my next appointment is at the end of June and I do hope that I will continue to stay stable and pain free.

Another year..

Happy 2nd RAnniversary to meeeee! Actually I think it was yesterday. But yeah it was around the 30th November 2009 that I had my first symptoms of RA. Two years.. not that long really but it feels like forever ago. It also seems like nothing compared to the next..oh.. 50-odd years I have to go living with this uninvited guest! However I can say that if my RA remains sleepy like it is right now, I could tolerate it squatting in my body. As long as I can't see you, feel you or hear you, you can sleep in the spare room, RA!! I should probably have something really philosophical to say about how I feel I've grown as a person and how strong I have become but I don't think I'm any of those things, I'm just quite lucky. All I can feel right now is happiness with my life at the moment, sprinkled with a bit of background anxiety for the future and topped with some cherries. Makes for quite a tasty RAnniversary cupcake, don't you think?

Thanks

Well, since it was Thanksgiving for most of you yesterday I thought I'd give my thanks to you all for the lovely messages on my last post! Really glad to have the support, during the good times and the bad! So, in keeping with my promise to write about good things... here are a few photos from my recent trip to Iceland! I had SUCH a wonderful time, it's an amazing, enchanting country. You feel like you are at the end of the world, or on another planet. Or at the beginning of time on ours. Steam and sulphur rise up from the ground, volcanoes rumble all around, glaciers advance from the mountains and the sky is lit up in technicolour. View from the church tower in Reykjavik:

Sulphur springs - it was pretty stinky but beautiful!

View around the sulphur spring, does it not just look out of this world?!

Another area with hot springs - it was freezing outside though, hence the steam..

A small island called Videy, with the Esja mountain behind. This is just outside of Reykjavik

The town of Grindavik

Northern Lights

Glacial iceberg lagoon at Jokulsarlon

Just lovely :)

Blog guilt

Ok, im gonna have to admit it. I've been a crap blogger lately. I think I've written about 3 entries since Spring. And the reason is pretty weak... I've not been blogging because I've been feeling really really well. That's terrible isn't it? We always moan that people who start to feel better distance themselves from the online community and stop participating and therefore there is this one-sided representation of RA online, which tends to be on the gloomy side. I was desperate to find upbeat stories when i first got diagnosed and I found very few. I vowed that if I got better I would keep writing. And here I am, going completely against that. I'm being selfish. I guess there are two parts to this, or maybe three. First of all, I don't feel comfortable writing big long posts about how great everything is when I know others are suffering. Secondly, I'm just out and enjoying life the way I never thought I would again and last but not least, I don't want to 'jinx' myself by writing a big post about how great I feel when it could all turn around at any minute! But there's no denying it - I feel fantastic. This whole year has been awesome, especially the last 5 months. I don't know if it's a natural remission or the hydroxychloroquine doing something.. I have a couple of wee symptoms now and then but basically I feel normal. It's my 2 year RAnniversary next week and honestly, 2 years ago I never thought i'd be living a life 'free' of RA. But I am. So I don't know if anyone wants to hear about my lovely life just now or if it'll just make people feel like crap?! But I will try to write a few posts in the next couple of weeks and maybe put a positive story out there for someone who's searching for it... because it turns out happy stories do exist with RA. :)

Eye tests

How hard is it to get an eye test?? Seriously. I have to get them yearly because of the hydroxy. Today is the third time I've tried to go for a test and been turned away due to bureaucracy and problems transferring my records from last year to this new opticians. It's not a big deal really, got me out of my bed this morning, but it just got me thinking about how much the mundane routine things related to this disease get in the way. I'm very lucky that I don't have to go for blood tests anymore but I did when i was on sulfasalazine and that was really disruptive as I always had to take time off work. I guess if you're on a combo of meds you have to do both blood and eye tests as well as your 3 or 6 monthly arthritis check ups, and then more appointments for flares or steroid injections and maybe even physiotherapy and blah dee blah. Honestly! It's enough to count as a part-time job. How nice it is to have a long-term condition! Anyway, rant over. I am actually in a splendid mood. Everything is going really well right now and I have to say I am feeling incredibly happy and positive. I'm away to Iceland and Germany for 2 weeks soon and can't wait, never been to Iceland before and it's meant to be absolutely gorgeous. I've just bought a new wide angle lens for my camera so can't wait to take some photos with it. I'm particularly excited about seeing the Northern Lights. I hope we get a nice clear night!!

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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blah

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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Michael Bosanko

Just discovered the work of Michael Bosanko, an incredible light artist and photographer. He produces striking images made only with coloured torches and a long exposure on his camera. Check it out, pretty cool stuff! It's making me want to go and try it myself, although I'm sure my attempts will be a lot less spectacular!

yuck

Meh.. heavy rain + feet playing up = duvet time and crap tv. I'm sure tomorrow will be better. At least it'll be Friday.

v

Spa Day

Why has no one told me how amazing spas are before?!

I mean, yeah people say they're great but why has no one shook me and gone "WHY HAVE YOU NEVER BEEN, YOU CRAZY WOMAN? GET YOURSELF BOOKED IN RIGHT NOW!!"

It was my mum's birthday at the weekend so as a special treat I'd booked us into a spa for the day. (Yes, I know, I'm a wonderful daughter ;) ) We started off going for a swim and then using the hydro pool which is kinda like a massive jacuzzi and has a waterfall type thing in one end. Then we went for a neck, shoulder and back massage - oh my god, I could have those every day!! Afterwards we chilled out in the 'relaxation' rooms, then did a bit more swimming, sat in the sauna and then had a 'Rasul' treatment which involves covering yourself in grey mud from top to bottom (quite a sight!) and sitting in a steam room for 35 minutes after which you emerge with the soft skin of a newborn baby.
Oh and there was lunch and a glass of champagne in the middle of all that too.

Honestly.. if I had more money I'd be there once a month. So nice to spend a whole day away with my mum too and catch up properly.

I think RA patients should get spa membership free on the NHS. I'll suggest that to my local MP and see what they say...

Reading

If you asked me what my interests are, I would probably list 'reading' as one of my top 5. This is because for most of my life I have been a bit of a book-worm. I always had my nose in a book as a kid and then did an English degree at university which I loved. I wouldn't say I'm a particularly fast reader, or read especially obscure or complicated texts but I can honestly say that getting lost in a book is one of my favourite things to do.

So why is it that I haven't finished a book in about a year?!

I blame a few circumstances - my job, for tiring me out and eating up most of my day; my laptop, for being an addictive, instantly gratifying form of entertainment; my car, for doing away with my hours spent reading on buses/trains; my friends and family, for being so lovely and active in my life and leaving me little time to myself.

None of those are really an excuse. I'm not *that* tired and I could be reading right now instead of writing this blog. And after I post it I'll still probably stay up watching rubbish TV programmes until I'm so sleepy I can't hold my eyes open. I feel like my brain is disintegrating and I think I've forgotten 80% of what I learnt at university even though it was only 3 years ago that I graduated. As much as I (mostly) enjoy my job, it isn't particularly 'academic'. I take photos and videos and edit them. No need for any inside knowledge of feminist theory there.

So another one of my 'goals' for the year is to start reading for pleasure again. Have you struggled to find time to sit down with a good book away from all the hustle and bustle of daily life? And have you got any book recommendations??

Spring clean

Well, the birds are chirping, little lambs are springing and easter eggs are rolling down hills. It must be Spring! And so comes the time for a Spring Clean.

I mean this both literally and metaphorically. Firstly, I'm moving house soon. I've been in this flat for 3 years but one of my flatmates is moving out so myself and my other flatmate are getting a 2-bedroom place in the same area. Something smaller and nicer. This flat is very big and great for parties but the furnishings are a bit tired and tatty. To be honest, I also quite fancy moving and giving my things a clear out. I've stayed put for too long and gathered too much rubbish. We're looking to move in June/July but it'll take a while to sort out so I'll neeed to do little bits every week until then.

Secondly, I am cleaning out my lifestyle. Sort of. As I mentioned last week, it was my birthday. I had a great time and threw a massive party which was a great success but has left me feeling very rough all week. Lately I've been eating badly, drinking too much and generally not taking care of myself. Now that my celebrations are over, I am putting the chocolate and the booze away monday-friday, getting myself back to yoga class, the swimming pool and dusting my bike off. I'm sure that making these changes will make me feel a lot better with my joints, and help me lose a bit of that winter chub I've gathered.

It's difficult to emerge from the long laziness of winter, but I feel excited about the next few months and making positive changes to my life.

Birthday

Happy birthday to meeee, happy birthday to meeee, happy birthday dear Squirrel, happy birthday toooooo meeeeeeeeeee!

A case of the blahs

So. This RA thing. I've had it 17 and a half months now, and I'm really not satisfied with it so I think I'm going to send it back. I've given it a fair go, and it turns out it's really not for me. Now, I'm sure I've got the receipt somewhere... A refund would be ideal but maybe I would settle for an exchange. Hayfever perhaps?

It's my 25th birthday on Friday. As a present I'd like my immune system back to normal, thanks. Oh and to win the lottery.

barefoot

This one's for cathy. Relaxing in the sun with my feet out. Lovely.

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sun

Hooray! What is this? Partially blue skies and it's the weekend?! Lovely. This is unusual for scotland. I've also just discovered I can post photos straight to my blogger from my phone. :-)

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Long overdue

I've finally got round to sorting out my photos from Paris. Here are a quick few!

Here I am up the hill of Sacre Coeur with Paris behind me:


Here we are enjoying a (very expensive!) beer in Montmartre:


The Eiffel Tower...obviously...


A pretty street..


and SNAILS!


What a great trip! And yes, I tried a snail. They look absolutely disgusting (like a shrivelled up piece of black bogey) but they actually taste lovely. Sort of like a prawn but not fishy? If that makes sense.

Otherwise, I haven't got much to report. My new manager at work is still driving me batty with her ignorance and rudeness but I'm trying my hardest to ignore it.

I'm busy planning mine, my great aunt and my mum's birthdays which are all in April and I'm really looking forward to celebrating. I'm 25, my mum's 57 and my great aunt's 86! Phew!!

RA-wise, I'm feeling good. Touch wood, I feel much better than I did Oct-Dec. Every few days I still can feel a bit of inflammation in a few joints on my right hand and occasionally in my right foot but it's not causing many issues and if it stays at this level all summer I'll be a very happy Squirrel. It's been over 3 months now since my finger injection so I'm a bit worried it'll wear off soon but trying not to think about it too much. I don't see the doctor until the end of May but I do have to go for a routine xray in a few weeks to check if there's been any change since last year.

So..that's it! Hope you're all enjoying the longer brighter days. :)

Back on my bike

It's the spring equinox and it actually feels like spring for the first time! Today was beautiful, sunny and mild. I wore light shoes for the first time this year - goodbye winter boots!!!!!! And I managed a quick bike ride in the park after work, the first of the year. It felt so good, I can't wait to get back in shape as I was huffing and puffing after only a couple of laps of the park. The clocks go forward on Sunday too, so goodbye dark depressing evenings and hello a very happy, summer-loving me!

Another moan

Ok, I know this is another moany post when I promised I would be posting lovely pictures from France. And I will!!
But.. I HAVE ANOTHER COLD! Arghhhhhhh. This is my fifth, yes, fifth.. since Christmas. Surely this isn't normal. How can I have had 5 separate colds in 3 months? Normally I am not prone to them at all. I get maybe one or two a year. Last winter I don't think I got any.

Maybe it's my office, a lot of people have been unwell. But a lot of people were unwell last year too and I was fine. And ok, last year I wasn't on any medication for RA but my medication now is plaquenil which isn't an immuno-suppressant. So it shouldn't have any effect on me getting viruses. Or should it?! Because otherwise I can't see what's different about this winter. I'm keeping warm and I eat plenty of fruit and veg. Maybe I touch my face too much and don't clean my hands enough.

I know it's not that big a problem, it's just the cold, but I'm getting really really REALLY tired of always having something wrong with me. It's either something to do with the arthritis, or a cold, or a bloody fingernail infection (which is finally healed up yay!). I would quite like a few months of just not thinking about my body and its ailments? Hmm yeah, wishful thinking!

but it's march!!!

Snow? Again? Really?!

I'm closing my curtains until April.

mustkeepcalm

Dear Irrational Half of Squirrel's Brain,

Please try to remember that during previous work-related stress flares you promised yourself you wouldn't ever let work get to you in such a way that it negatively affects your health. I feel that you are currently breaking that promise and your stress levels are rising.

Because however much you don't like your new manager's harsh style and however much you're upset that the person you fancy on your team is leaving, these problems aren't really the end of the world and probably not worth the amount of negative energy you're throwing at them.

Also try to remember that as crappy as work is just now, it would be a hell of a lot crappier if you stress yourself right into a flare.

So, please, breathe. Relax. Tomorrow, go into work and let the bad atmosphere wash over you and concentrate on the really important things in your life - your health, your family and friends.

Ok? Deal.

Yours sincerely,

The Rational Half of Squirrel's Brain

RA and work

I was just reading through some blogs and Pollyanna's post about RA and work made me realise something crazy.

There's been a lot of crazy stuff going on at my work, basically there's a restructure of the department and a lot of people aren't happy and are leaving, including all my old bosses.

This means that in a month's time no one in the company apart from my best friends will know I have RA. And no one on the management team will have seen me break down and cry about it.

This is very strange. It's like someone's wiping the slate and now it's my choice if I am to tell the new managers.

How odd. I'm gonna have to think about that one.

Back home

I'm baaaaack! Paris was great. I'll do a longer post with pics soon. I am so determined to get fluent with my French now. I'm ok at it but nowhere near perfect. I've been really inspired to work harder in my class and beyond. I'm bilingual anyway (English and Bulgarian - most random combination) but would love to speak 3 languages, it sounds much more impressive haha. Plus then I could go work in Paris or Montreal or somewhere with nicer weather anyway.

Thankfully my arthritis only gave me minimal foot bother despite the mamoth walking around the city. I got a bit grumpy one evening when my foot suddenly piped up and people were like 'oooh lets walk all the way from the notre dame to the eiffel tower down the river' (this was about 8pm after about 7 hours of sightseeing anyway). Thankfully we decided to take the metro in the end, phew! I didnt bring up my RA, it's always so awkward with fit friends isn't it? Hard to understand/explain too because the day before I'd walked all day no problems. Overall though, very well behaved. Well done, RA.

I did, however, manage to get a massive finger infection from a hangnail!! I'm such a doofus, I pulled it off and was too busy enjoying myself so I ignored it and didnt clean it and it went wild. It feels swollen exactly like a flare in the end joint of my finger only it's near the nail and not the joint. So now it's gone green and I'm on anti-biotics. STUPID FINGERS why won't you ever be NORMAL?!

Apart from that, life is just keeps on rolling... Hope you're all keeping well!

Human Planet

I don't know if any of you are UK based but if you have access to it I highly recommend watching the BBC's new documentary series The Human Planet.



Each episode focuses on a different climate zone or area, such as Deserts, Mountains, the Arctic, etc and on the ways in which humans have learnt to interact with the nature around them in order to survive in those harsh environments.

The cinematography is so gorgeous and the lengths to which the production teams have gone to get the footage is incredible:

http://www.youtube.com/watch?v=2HiUMlOz4UQ

At the end of each episode there is a 10 minute 'behind the scenes' short, explaining how they shot one of the sequences from the episode. As some of you might know, I am a photographer/videographer so it all fascinates me. I work in the slightly less exciting world of fashion online retail, but I would love to work on something like that one day. Or maybe I wouldn't! I'm not sure my arthritis would agree with some of these enviroments and the long days spent lugging gear around. But you never know...

Wheel of fortune

I know I've only had RA for a year and a bit, but so far it seems I don't get 'acute' episodes, but instead my flares and remissions build up gradually for a while and then subside gradually. Because of this, I almost don't notice it happening for a long time.

The past month I've felt pretty great. The morning stiffness in my hands is all but gone, my foot flares have become very minor and infrequent. I've been managing long walks with no problems. I haven't felt this well since September. Yet it's taken me about a month to realise this. It's strange how it takes your mind a wee while to catch up with your body. I'm still waking up and squeezing my hands to get them moving. I'm still expecting that a long walk will cause my toes to swell. When it doesn't, I'm surprised even though it hasnt happened for weeks.

It also took me a while to realise I was flaring back in October. My brain sort of didnt believe it for ages because I was used to being well for months before that. I was surprised at the stiffness in my hands back then, just as I am surprised by their lack of it just now. I can't quite believe I'm feeling better and I think it will take at least a few more weeks of this for my mind to quite grasp it. I don't know why I'm better, and of course I am terrified it won't be for long. But still, I am hopeful that it might be the start of a long good patch!

Here Comes the Sun

Little darling
It's been a long, cold, lonely winter
Little darling
It feels like years since it's been here

Here comes the sun
Here comes the sun, and I say
It's alright

Little darling
The smiles returning to the faces
Little darling
It seems like years since it's been here

Here comes the sun
Here comes the sun, and I say
It's alright

Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes

Little darling
I see the ice is slowly melting
Little darling
It seems like years since it's been clear

Here comes the sun, here comes the sun and i say,
It's alright...


Come on, sun. Please come back. I'm singing my sun song and I might even attempt a sun dance. Does anyone care to join me?

hmmm

Work, work, work.

Cook, cook, cook.

Tv, tv, tv.

Sleep, sleep, sleep.

So bored, can't wait for my trip to Paris! 2 weeks...

Check up

I had my 3 month check up today. It was very busy so I had to wait almost 45 minutes to be seen and I forgot to bring a book which left me having to stare at things/people in the waiting room the whole time. I like to get in and out of there as quickly as possible because to be honest the place depresses me. I'm always the youngest person there, occasionally there is someone in their 30s or 40s but it's mostly middle aged or elderly ladies. I know they must have young patients too but in the 10 or so times I've been to the clinic I've never seen one! A lot of people shuffle about or use walking sticks and some have visible deformities.

I don't like going there because it scares me.

I also don't like going there because they weigh me every time and today they informed me that I have put on 3kg since october!! Stupid Christmas weight. I resolved to sort that out but then I was so depressed from being in the hospital that I had to buy some chocolate to cheer myself up. It's a vicous circle, I tell you!

Anyway, I didn't get to see Dr A, I guess because it was so busy. I had a young, pretty registrar instead which was nice! She said the same thing as Dr A, that it's not too clear if I need methotrexate or not. I am in a good prognostic category and I dont have any swelling just now but there is intermittent activity (like the mad pointer finger in dec) so obviously it's not all under control. What they're gonna do is send me for new x-rays since it's been a year since the last ones. If there's any change at all they'll stick me on mtx. If there's nothing and my symptoms continue as they are then we'll probably just wait...and see.

So I have to go back and get an xray at some point before my next check up in May. I'd be quite surprised if there was any change in my xrays since I havent had a great deal of pain/swelling but I know it is possible for that to happen.

So yeah.. long rambling post. But in summary - hospital waiting rooms are evil, I need to lose 3kg, I can still drink until at least May and I have to get zapped by the radioactive machine again. Overall...alright I suppose.

weird

This is the weirdest illness in the world. One day you can't walk half an hour without pain then the next you're out dancing all night and walking home 2 miles. How can you ever get used to that? The way I try to deal is just try and do everything and if I can't then go home. But then there are the amazing days like today that I feel like a normal 25 year old and it makes me feel humble and grateful. I can't believe people take this for granted. I did too. It's such a sobering thought. I can't believe I did this tonight. Sorry to go on about it but i've been having foot troubles since october so this is quite incredible. Yay.

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My weekend in photos

What a lovely weekend. I couldn't feel happier going into the week.

Started on Friday night with a lovely dinner at a Kurdish restaurant in Edinburgh for a friend's birthday:



Catching up with a lot of people I don't get to see often anymore, great silly banter and perhaps a little bit too much of this:




Saturday was spent shopping around my neighbourhood for bits and bobs and tidying my house, as well as watching a few interesting documentaries. In the evening, I headed out for a few drinks for another friend's birthday and then to a friend's house to watch French films, in anticipation for our trip to Paris next month:



A lovely bottle of champagne (all in the aid of researching french culture) was also consumed:



Today we slept in late and grabbed a late lunch in a bistro in the West End of Glasgow where I had a delightful veggie full breakfast and an even more delightful cupcake for dessert:



We also spotted a celebrity, in the form of very famous Scottish comedian Frankie Boyle:



We then had a stroll around a vintage market which takes place in this bar/restaurant every Sunday where I purchased a lovely necklace:



And to round up the weekend I went to see the King's Speech at the cinema which was very enjoyable:



Just a wee reminder to myself for when I'm down in the dumps that my life can be and often is really good. :)

Something different

I've been posting a lot about negative things lately. I'm boring myself. Tonight, I thought I'd share with you a painting by an artist I love, Vladimir Kush. This painting makes me feel light and dreamy. Shame I cant find a bigger resolution image.
Enjoy!

Crazy lady?

Ok, I know that RA makes us all feel a little crazy sometimes.

Tonight is one of those times.

Before I tell you my story, I want to state that I know 100% that my disease is real and that my symptoms aren't in my head. But sometimes, like tonight, the thought does cross my mind.

Ok so, I was out with friends for a birthday night out. We went to dinner, then a bar, then a club. I was fine until about an hour and a half into the club (where there were no seats) and I could start to feel my right foot toes tingling, which for me means...uh oh..swollen toes are coming very soon. So I waited a bit, it was getting worse, so I made my excuses to leave.

Nothing strange so far..BUT..the reason I'm really confused is this. 2 days ago I was in London with work, on a fashion shoot. I spent all day in airports, then on my feet for about 6 hours filming, then airports again. And it was only in the airport queue for security on the way home that I noticed anything funny about my feet.

Where as tonight, all it took was an hour and a half. Yes, of course the disease varies from day to day, I know this. But what confuses me is this - I was REALLY bored tonight in the club. The music was crap, the chat was crap and I just didn't want to be there. On the shoot, I was having a blast and was really busy working and not really thinking about anything else.

So....even though I KNOW it's silly and it's not in my head.. is it any wonder that sometimes I question myself?? I can't help but notice a pattern...if I really want to do something and I'm enjoying myself I get through it better. If I'm bored and want to go home anyway, my foot seems to swell more.

I don't know what to make of it. Am I unconsciously using my RA as an excuse to leave things I don't want to do? Or is it just a coincidence that my flares happen during dull nights out? I'm definitely not imagining the flares. But I wonder if somehow I pay attention to them more when I'm not having fun. I think I'm going mad. Oh well! Stupid disease.

2011

It's that time of year when we think about the months ahead, and if you're anything like me you'll be feeling a mixture of hope and apprehension.

I mostly can't wait for winter to be over. It's NOT my season. I feel like since October I've been going downhill. I had a relationship break up, my arthritis has been more active and I've neglected my exercise and diet. In short, I feel like crap. Boo hoo! Oh and to top it off I'm choked up with a bad cold just now. *cue violins*
But at the same time I don't feel nearly as bad as I did this time last year. As much as I have to admit to having my down times, mentally I'm generally coping better. I'm looking forward to the year ahead and I'm sure that once the weather warms up and the days grow longer I will find myself rejuvinated. I love Spring, it brings me joy and hope. I can't wait to see the world wake up from the long dark of winter.

So here are some positive things which I can't wait for this year:

A trip to Paris with my friends in February.

A spa weekend with my mum.

Getting back on my bike once the snow clears and doing some long country rides.

Wearing sandals.

BBQs.

A girly holiday to somewhere sunny in June.

Working with my doctor to decide on the best treatment plan going foward.

Formulating some sort of plan about where my career is heading.


Yup, I think it's gonna be an alright year. You heard it here first!

Arthritis Home Test

I was just reading through my daily 'rheumatoid arthritis' google alerts when an article popped up saying that this is now on the market:
http://www.arthritishometest.com

Yes, folks! A home test for arthritis. I was puzzled too. Basically it's a home antiCCP test that you can purchase for a mere £25.

I'm really not too sure what I think about this. I guess it's good to have something to show rubbish GPs who dismiss symptoms, but surely we shouldn't be responsible for doing our own DIY diagnostic tests when we pay taxes for our health service??

I'm also worried that even though it mentions it's not always accurate, people who don't really know the ins and outs of RA but have the symptoms will purchase the test, it'll be negative and then they'll go "oh it's ok, I dont need to go to the doctor because the test says I'm fine".

It's made by 'Euro-Diagnostica' who from their website appear to be a large legitimate company supplying diagnostic tools to hospitals, etc. It is quite strange they've marketed this, I'm not sure what its purpose is. I guess making money out of the paranoid hypochondriacs and the poor desperate people who are getting nowhere with their diagnosis.

Although I did have to wait about 3 weeks for my antiCCP to come back (negative)..for 25 quid I could've done it in 10 minutes. Way hey!!

What do you think of this?? Do you think a GP would take notice if a person with joint problems who they've previously sent on their way came back with a positive one of these?