Here we are again..

It's time for the 'End of the Year' post.

I think this has been a very odd year for me. 2011 was a brilliant, exciting year. Lots of things happened in work and my private life. Plus I had a wonderfully flare-free year. It's hard to follow that!

2012 has been a good year. Not exceptional but solidly good. And what more can you ask for really? I got the amazing opportunity at the start of the year to travel to Peru. It was really an adventure.
I had a pesky flare around the same time but once that got under control in June I have enjoyed the most symptom free 6 months since the start of my illness. So that's also a good thing to be thankful for.

I'm feeling some aches and pains starting up the last couple of weeks and I hope they're short lived, but as always - we shall wait and see!!!

Despite all the good things, I'm feeling a bit off. I've been reading up on it and it is apparently quite normal to feel a bit down in your mid-late 20s. Something about finishing with formal education and starting grown up life and working out who you actually are and what your goals are.

I don't really make resolutions as I'm really bad at keeping them. Instead I sort of reflect and try and set small goals for myself which are easier to achieve. My goals so far are to keep being involved in the community garden and to try to go back to exercise. Also to try to find more time for myself and doing the little things that make me happy.

That's it really, wishing you all a happy, prosperous and healthy 2013!

Eye exam

I've just come back from my annual eye test which I need to check that the hydroxychloroquine I take for my RA isn't building up in my eyes affecting my vision. Thankfully everything is fine, both with the drug and my general vision too. No glasses needed (surprising, considering how long I spend staring at computers)!

It's so great to know that I can continue on my meds and that there are no adverse effects from taking them. It's sometimes worrying to be on daily medication, especially so young, but good to know I'm being monitored closely.

Also, as always I feel grateful for the good care provided to me for free by the NHS. So lucky to have this service!

3 years

Oh my, how time flies. It was my 3 year RA-nniversary on Saturday. I think I also started this blog not that long after. I can't believe how quickly these few years have gone by. Must be getting old?!

The joy of digging

As I mentioned in my last post, I've joined a community garden in my neighbourhood.

Today we had a group 'digging' day, to top up the soil and prepare the beds for next year. It was really good fun and between the 6 of us we managed to sort out the 2 TONNES (!!) of soil in a couple of hours. I learnt a lot about the composition of soil and what nutrients are required for vegetable growth. I also found some hidden veg in some of the beds from this year so I came home with a bag full of fresh carrots potatoes and beetroot.

It was really nice to spend an afternoon outside being active. Working in an office and living in a flat sometimes makes me really sedentary and i miss out on a lot of 'outdoors' time, especially in the short winter days.

I was also very grateful for the fact that I was able to take part in such a demanding physical activity like soil shovelling. Thanks to my meds (and a large amount of luck!) the RA seems to be at bay for now. Hooray, bring on the wheelbarrows!

Wee update

Things in Squirrel-land are pretty good right now, busy hopping around branches and collecting nuts for the winter and what not!

I'm just back from a short holiday in Berlin with my girlfriend (our first holiday together!) and I was in London before that for a work conference. Busy busy busy. This weekend I have a family friend staying with me but to be quite honest what I'd really like to do is just have a quiet one, sit around in my PJs and watch crap TV. Unfortunately all these social events seem to all happen at once. So hard to be popular and in demand, haha!

Something I'm quite excited about right now though is that I've joined a local community garden. It's a charity project which gives people in the neighbourhood a chance to get involved in growing our own vegetables. We're just planning what to grow next year and I'm really looking forward to it. I've never grown anything before so it'll probably be a bit of trial and error but there are more experienced members who will be on hand to help. The area I live in has mostly flats, so it's great to have a space and the facilities to grow our own veg.

So that's it really for now, nothing to complain about!
I hope everyone has got their Christmas jumpers on, not long now till Santa comes!!

Vit D

As the winter nights draw ever closer, I got to thinking about my RA flare pattern. I've only had it 3 years so maybe not long enough to draw any real conclusions but it started in December, and every year since then I've felt really good June-Nov and flared post-Christmas only to settle down again in summer. I don't know if this is just clutching at straws, but maybe the lack of sunlight has something to do with it? I don't think it's the cold because when I've travelled temperature changes didn't affect me and to be honest the difference in temperature between the Scottish summer and winter is only about 15 degrees! However, we're pretty far north which means we get super long summer days and super long winter nights!! From the end of Oct when the clocks go back until March I don't see any daylight Monday to Friday as it's dark when I leave for work and dark as I go home. REALLY DEPRESSING!! Even at the weekends it's easy to sleep in until about 11-12 (I like long lies!) and then you only get about 4 hours of daylight before it starts to get dark again. And that's only if the sun can peek out from behind the thick rainclouds!!

I've therefore decided to take some Vitamin D supplements this winter. I'm starting from today and have enough to last me 3 months. I've been 99% symptom free since June so we'll see if this year I can avoid the dreaded 'winter flare'. Probably not, but worth a try (even if it's just to satisfy my curiosity!).

August updates

How strange it seems that August is almost over, and with it summer. Not that we get much of a 'summer' in the typical sense, but I do love the long light nights, the greenery and the milder temperatures. This year seems to have flown by!

A couple of little updates - my girlfriend has moved in with me temporarily, which is really fun. I've never lived with anyone before but I'm really enjoying it. She'll only be here for a couple of months until she saves up for her own place but it's still a nice 'trial' for the future!

We are also cat-sitting for my flatmate's sister so we have a little bundle of fun called Bailey for a few weeks. Last time she was visiting us she did a little naughty poo on my bed quilt, so this time my door is staying firmly closed!!!

I've been doing a bit of freelance work lately in an effort to get some more money and expand my skills. It's going quite well and I hope to keep it up.

And finally, I'm away to Bulgaria next week for 8 days. Unfortunately it's more of a 'work' trip than a holiday, as we're dealing with some family stuff but hopefully we'll get some nice evenings out inbetween. Also it's sunny! I'll get my Vit D in before the long dark Scottish winter begins..

Adventures

This weekend we had some lovely weather (for once!) so myself and a few friends went for a wee road trip to the countryside. We visited an abandoned Ironworks factory and steam railway. I'd seen the location in a BMX video last year and really fancied visiting it myself (although without a BMX!!)

We had a great time exploring the old buildings and trains. It's quite sad to think of how many people must've worked in the place for so long and now it's falling apart. Although it is strangely appealing in its decay. Here are a few photos I took:































Also if anyone's interested, here is the BMX video shot there. The rider is a mad fellow! Amazing stuff:
http://www.youtube.com/watch?v=ShbC5yVqOdI

It's been a while

I haven't posted much lately. No particular reason for this, apart from I've been busy with life. Work is non stop, but I have a new attitude where I don't let it stress me out. I just do what I can! My RA is doing great just now so I'm enjoying the break and thinking about it as little as possible. The summer in Scotland so far has been a total washout, worst summer we've had in ages. Here's hoping we'll get a little sunshine in August!

I really have nothing to say..haha. I'm so boring!! Sorry readers. I'll try to do something interesting soon. Maybe I'll go skydiving or something. Or wrestle some alligators.

The future

Thinking over the topic of my previous post, I've realised that worrying about what my next career step will be is a great thing.

2 and a half years ago when I was diagnosed I thought my future was over and anytime I thought about anything past 'tomorrow' I started to panic. This lasted a long time, and then sort of morphed into an attitude of 'nothing really matters, I'm just going to try and enjoy myself because who knows how long I will have to do these things'. Now my mindset seems to have changed again, and I am thinking about where I'm going with my life and my career and making goals for myself.

It means I must think that there is a point in planning for the future. What a turnaround, and despite the flare I had a couple of months ago! It's happened so slowly that I've barely noticed. I have no idea what I'm going to end up doing but just the knowledge that I am capable of thinking positively for the future and making plans now makes me happy.

Decisions decisions

I'm having a bit of a weird freak out. I'm so bad at making any sort of decision! As you probably know I work as a photographer for a big UK fashion retailer. I've been there 3 years, the job is pretty good but there are a lot of issues as well. It's a 45 minute commute from the city I live in and also I'm not sure of how far I can progress long term. The pay's not great. So I was a bit fed up on Friday and I was searching through job vacancies and I found basically the perfect sounding job for me. One issue - it's in Berlin!!

For about an hour I got really excited, I love Berlin. I was all ready for applying, but then I started freaking out. First of all, all my family and friends are here and I actually do have a really great life in Scotland. I can't really stand the thought of being so far from my mum, we're really close. Second of all, I have a great hospital and doctor for my RA and I have no idea what would happen with that if I moved or if I could handle the stress of moving and having RA. And third of all, it's scary and I don't like change. Hahaha.

But I love Berlin, I have 3 friends who live over there so I would know some people. The weather is WAY better and I'd probably get to learn new things about photography, maybe even to speak German.

I know I should apply but I am such a chicken. All these 'what ifs' running around in my head. I don't know what to do! I know most people would probably say 'go for it!' but I think having RA has really shaken up my confidence about these things. At the moment I'm settled, if I need time off my job gives me that. I'm close to my support network. But then I don't want my illness to hold me back either. OH I JUST DON'T KNOW!

They probably wouldn't hire me anyway haha. Freaking out over nothing, as per usual.

A bit of a fail

It's been a bit of a funny week. As with anything RA-related, the only thing you can be sure of is that it's always going to surprise you. Last time I had a steroid injection it worked like magic - no pain, and the swelling disappeared within 2 days and stayed away for a year and a half. This time it's been pretty tough, with the injection causing a steroid flare and MEGA increase of pain for a few days and not really bringing the instant relief I was hoping for. Today, 5 days post-injection I sort of feel like I'm heading in the right direction but it's really not been plain sailing and I'm not sure if it will work properly. I do feel a bit better today but I don't know if it will continue to improve or if this is it. I guess I have to wait and see. I don't understand how it can be so different from one time to the next. What's changed?? I hate this disease.

I have a check up appointment on the 13th June so I guess I will see how I am by then and discuss my options with the doctor. I guess the positive is that apart from the damn hand I feel well, so that's something to be very grateful about.

I am also very grateful for my girlfriend. I've been quite down lately, as I tend to be when I flare (thoughts of impending DOOM tend to descend upon me during these times - I can be very dramatic!). Last time I flared I was single and did my usual routine of crying, feeling sorry for myself and retreating into my room. This time I've taken a different approach and just tried not to spend much time on my own at all. I avoid thinking, because thinking leads to worrying. I have just been spending all my time with my girlfriend who is very understanding of my problems but also very good at cheering me up and making me laugh. I can't believe how much a hug can help me when I feel at my lowest. It's really nice to have some support this time around.

Hmm

I had my injection yesterday (no numbing cream this time, I'm a big brave girl!) and all seemed fine. Today, however, was pretty unpleasant. I had to go to work mega early and straight away I knew it was going to be bad. My finger was so sore that any contact with it resulted in a loud OUCH. Even not moving the hand, I still had that nasty deep ache that just won't budge. The muscle pain radiated up to my wrist. Lets not even talk about when I would accidentally bend it a little. Wow-wee. It was a fun morning editing photographs, for sure. 10 points to me for creative holding of computer editing tools. How do some of you do this with not one, but 10 fingers constantly in this state? I have massive respect!! Anyway I dosed up on the pain-dullers and thankfully it seems to have passed. Apparently 'an increase of pain' can happen for about a day after a steroid injection. NO KIDDING. All good now though, back to acceptable levels of discomfort. So now I just sit and wait and hopefully tomorrow a little miracle will occur and I will see my knuckle. If it works, it'll totally be worth it.

On a side note, I've been reading some fun books lately. "Confessions of a GP" by Benjamin Daniels and "In Stitches" by Neil Edwards. Both are books by doctors who have compiled a series of thoughts, real life stories and general musings on the medical profession in which they work every day. Both have been very enjoyable reads, especially "Confessions of a GP". Very interesting if you are based in the UK, as it explains a lot of the frustrations and bureaucratic processes of the system. As a chronic patient, it's interesting to get a glimpse into the minds of those treating us. Plus, they're both really funny writers. Both books are available for the Kindle (my new love!), for a bargain price of something like 99p, so check them out if you have the time.

Better news

It turns out the nurse on the phone was at fault. I called again and spoke to my doctor on Friday and she had told the nurse to schedule me in, so I don't know why she was being awkward with me. I have an appointment on Thursday! Yay, I can't wait to bend my finger again. Isn't it sad what arthritic people get excited about? 2 years ago I was really scared at the prospect of a joint injection, now I'm looking forward to it. Hope it works!

P.S. Thought I'd update my blog 'look'. It was getting a bit old!

Emergency?

Yesterday I called my doctor to get a steroid injection into my finger. It's been acting up for over 2 months and I'm sick of it. Last time I got it injected in 2010 it sorted it out for well over a year, so I was sort of hoping it would help again. However, the nurse rang me back and asked: "So, is this an emergency?". I was quite taken aback as last time I got an appointment no problem in the same week. I didn't really know what to say. Is it life or death? No. Am I completely disabled by it? No. Does it affect how I use my (dominant) right hand every day? Yes. Does it make my job as a photographer more difficult and require me to use my hands with caution? Yes. So I basically froze up and mumbled something about it being quite uncomfortable to which she said that since there were no available appointments until the end of May, I'm as well waiting until the 13th June when I have a check up appointment anyway. I got off the phone call feeling pretty deflated. I don't know if I should've just taken the end of May appointment, but something in the woman's tone made me think that I was exaggerating my discomfort, and that I'd be taking away time from patients who need the appointment more. The whole thing has left me in a foul mood, and feeling like I am a hypochondriac. Anyway, so now I have to either call back and demand an emergency appointment (and look like a drama queen) or wait until the 13th June which is 5 weeks away. Doctors sometimes have a special way of making you feel very small.

Pictures

Here are some photos from Peru taken on my Holga film camera. I've only just started shooting on film for a bit of fun so still getting to grips with it.

Main square in Cusco during the Lord of the Tremors parade the week before Easter. They go all out for religion out there, quite a culture shock but interesting to see.

My friend and some immaculate Inca stonework on top of Pisac ruins, in the Sacred Valley.

Huaca Pucllana, ruins in the middle of Lima from a pre-Incan civilization.

A curious little alpaca!

View over Cusco.

Pretty yellow flowers that were all over the Sacred Valley.

And of course, the classic shot of the city in the clouds! I took hundreds on my digital SLR but these have a lot of character, I think. I still need to go through my photos from the rainforest, and then I'll post some. Otherwise, I'm just settling back into normal life. Work is going ok for once, and apart from the fact it's REALLY UNSEASONABLY COLD for may, I'm enjoying springtime and the long days. Nothing much else happening right now, apart from having some swelling in my right index finger again. Maybe I can chop it off? Yes? Or maybe I should go back to see my doctor but for some reason I'm reluctant to. Otherwise I feel fine and full of beans. Hope spring is creeping in wherever you are and warming everyone's bones!

Back!

I've just returned from my trip to Peru! A bit battered and bruised but in one piece! Had a crazy 3 weeks, saw so many amazing places and had some very memorable experiences. I will do a longer post with photos soon. Day off work tomorrow, thankfully, then back to real life.. Oh it was also my birthday on Sunday there. So I'm now the grand old age of 26. I had a relaxing birthday in Peru, as it was the end of our holiday and we were pretty much wiped out, but I'm looking forward to catching up with my friends and family this week and celebrating properly.

NHS part 2

Just to follow on from yesterday's post, today I had a very positive experience with the NHS which once again makes me thankful for it. I feel a lot better but I'm still having issues with one of my finger joints and rang my doctor on Friday to see if I can maybe get it injected before I leave for Peru so that I am feeling 100% for my adventures. I rang at about 4pm and got her secretary. My doctor rang me back today and we had a chat and she said she is reluctant to inject the joint now as it is a fairly tricky one to inject and there's a (very rare) chance it could gets infected. I leave a week today so she didn't want me to end up in Peru with an infection, which is pretty sensible. But she asked me how I was feeling in general, and gave me an appointment on Friday just to 'have a chat and look at the joint' and to reassure me. I tried to say not to waste her time and that I'm sure it'll be fine, but she insisted I come in for a chat. I always feel like she's my second mum or something, she rings me up if I'm worried about something and talks to me about it personally. Maybe I've just lucked out, but it is really great to have such a caring doctor. And it's all for free.

NHS

I don't know how much some of you know about the UK health system, but basically the National Health Service means that everybody gets free healthcare, no exceptions. It has its downfalls, don't get me wrong. Some parts of the country are better than others, some areas have more funding and access to more drugs. The waiting lists can also be mind-boggling at times. However, the fact is I've had brilliant care by the NHS my whole life and have no reason to complain. I never have to worry that if I lose my job in the future I won't be able to afford treatment. In Scotland, we don't even have to pay a nominal charge for prescriptions. However, the coalition government that is in power just now (it's essentially a Conservative government) is trying to introduce a new Health and Social Care bill, which is proving to be very controversial. At the heart of it are two principles, giving GPs control of funding for services in their area and introducing more private competition within the NHS services. At the moment, NHS hospitals do outsource some services to the private sector but there is a cap which is very low. Under the new proposals, this cap would be raised to something like 49%. The government seem to think that greater competition for services will increase the overall quality of services for everyone. I'm no expert, but it kind of scares me that a hospital (which is currently low on space and has long waiting lists) would be able to offer almost half of its beds to private patients (probably Mr and Mrs Abbot-Smith paying for their cosmetic surgery or something). Critics of the bill say it's a stepping stone to privitasation of the NHS. The Tories do love to privatise everything, so it wouldn't surprise me if that is their long term goal. This is worrying to people such as myself who are chronically ill. As it stands, no private healthcare plan covers pre-existing health conditions. So who knows what would happen if people had to sign up for them. I also do not want the UK to have a two-tier system, with people who can afford to go private getting the best treatment and the NHS struggling to care for the poor, chronically ill and unemployed. As I said, I am no expert and all the criticisms could just be because people are afraid of change. We've had the NHS since the second world war and it's something we're very proud of. Hopefully it'll work out for the best, I guess only time will tell.

Back to normal

So the past couple of weeks I've been feeling back to normal. I think things have settled down on their own, so that's really good. Maybe it was all stress related because I've had so much on at work. Now that's passed and I can just focus on my holiday! Not long to go now, I leave on the 28th. Got all my vaccines, and most of the hotels and travel booked. Got a few more bits and bobs to book and a few more items to buy. So excited, this month is going to fly by. I've also got one of my best friends who I visited in Iceland coming over next week. She's great fun and I can't wait to have a few days with her. Overall things are definitely looking up. And I can feel Springtime in the air.

..and back up

I've been feeling much much more positive the last couple of days. I don't know what happened last weekend, some sort of meltdown. I guess that's ok. I'd had a hard week last week, we had a big photo shoot happening at work Thursday/Friday and that took most of my energy to organise and carry out. Maybe I'd just had enough by the time the weekend came around, both in body and spirit. I always think that it's ok to have little wobbles, as long as you don't stay down for too long. So I am up again and ready to move forward. Currently enjoying a rare peaceful evening on my own in the flat, tucking into a jar of Nutella. Dangerous!! Flare-wise, my feet feel much better and haven't hurt for a few days. My hand is still a bit swollen, but it's much better than it was at the weekend. I'm going to wait and see how the rest of the week goes, I have hope that with my renewed positive and stress-free attitude things will improve. I am getting my final vaccine for Peru tomorrow - yellow fever! It's a live vaccine so maybe my immune system will busy itself with creating anti-bodies and leave my joints alone. Hope you all have a restful happy weekend!

Bah

I need to get out of this funk. I'm starting to feel really flat and teary, just wanting to stay in bed on days off. Generally moping and feeling sad. My hand and feet are still playing up. I'm not sure if it's worth calling my rheumatologist for a steroid injection into the finger joint. Maybe next week, see how it goes. Maybe things will turn around on their own. Blah blah blah blah. I'm so sick of this. I really thought I was better, but I guess there is no such thing with RA. Sorry to be so negative, I think I just need to rant. I haven't really spoken to anyone about how I'm feeling just now, because I have been so well for ages and ages and I don't want to drag people down with my problems again. Thing is, I have a new girlfriend.. well, not that new. Almost 5 months now. And I really should tell her what I'm going through (she knows I have RA but doesn't really know the ins and outs of it). Again though, I hate dragging people down with my stuff and I know if I start talking about it the tears will come flowing out. I'm not sure 5 months is long enough to burden someone with this heavy stuff.

Limbo land

I've had a tough week, emotionally. I'm still in a kind of no man's land, not quite flaring and not quite back to normal. As much as I hate to admit it, I have let myself get overwhelmed by feelings of frustration and negativity. I've found myself moping around the house, feeling sorry for myself and my lot in life. Pathetic really, since I'm not suffering that badly physically and even on my own very mild scale of rheumatoid arthritis this is hardly anything to panic about. I'm not seeing any particular signs that this increase in symptoms could get out of control. So I am slightly ashamed of myself and my reaction, but in order to move on I must accept it as something natural and human and something which I can work through. Fear is my biggest enemy and I have to learn to face it head on. During my first ever flare in 2009 I spiralled into a 3 month long depression mostly brought on by fear. I cannot and will not go there again, no matter what happens. Sometimes when things are getting on top of me, I think that I am weak. That I have nothing to complain about, because even in full flare mode I can still go about my daily life without too much pain or restrictions. I think that I am fortunate and feel guilty for feeling so down and depressed. Then I have to remind myself that I have the right to feel down, that RA is a horrible thing to live with no matter what the severity. It's the fear and the disease who are the enemy, not myself or my human emotions. It's ok to be down sometimes, but I have to learn to control my fears about the future before they become more debilitating than my actual symptoms. At the end of the day, a weekend spent moping around the house because you're depressed that something terrible may or may not happen is just letting the disease win. So I got up, dusted myself off and left my house and my fear behind today. And I feel so much better.

Uncertainty

Hmm... it's a funny old ride, this RA business. It sure is a world of swings and roundabouts. As you all know 2011 was a pretty great year for me and RA. For the last 6 months especially, I pretty much had no symptoms apart from some stiffness in the hands. I was hoping this would continue in 2012 but at the moment it's looking unlikely. Earlier this month I had some pretty bad knee pain that I haven't had for a long time. That's gone now but I've also had a few bouts of toe pain and swelling but this does happen to me from time to time so I wasn't too worried. Just this evening some swelling has popped up on my right index finger. It's relatively slight so far but I haven't had any swelling in my hands since Dec 2010 so this can't be good. I know these things are minor for now. But when you've been so well for so long it kind of blind-sights you. All I can do is hope it's just a slight glitch and soon everything will calm down. I'm trying not to panic but I can feel anxiety rising up within me. It's so cruel, how it almost tricks you that it's gone away and then you're brought right back down to earth. I guess I need to remember I am still lucky that I get such good periods inbetween. On a positive note, booked our flights to Peru!

Crazy adventures

Ok so maybe I'm crazy, but my friend and I are in the process of booking a trip to Peru in April. Basically I came into a little bit of money last year and I've always wanted to climb Machu Picchu so I figured I now have the opportunity to do it. There are plenty of places in the world I plan on travelling to, but since I developed RA I thought I'd better go and do this one quickly. Who knows if I'll be in any state to hike up a mountain 5, 10 years from now. Depressing thought, but you never know with this crappy disease. Plus this year at work I've got an extra week holiday allowance as I've been there for 3 years, which allows me to comfortably take 3 weeks off work and then have plenty of holidays left for the rest of the year (yeah, sorry North American friends, we get a lot more holidays!). So everything seems to be falling into place but along with the excitement I'm getting really worried!! Am I mad?? Going to a developing country for 3 weeks and trying to hike up a really big mountain when I have a pretty serious disease on the go here. I mean, I've been feeling well for over a year now with only wee problems here and there but maybe this is pushing my luck! Then again I can't not do this just because I'm scared of what may or may not happen, right?? I am worried about the hiking, as my feet are one of my biggest problems (although much less so now). I'm also worried about the radical change in climate, and the GAZILLION vaccines I have to get before I go. I think I need: Hep A, Hep B, tetanus, typhoid, yellow fever, rabies and malaria tablets. Another reason I think I should go and do this now is because currently my only medication is hydroxychloroquine and that doesn't suppress my immune system therefore I can safely have live vaccines. Who knows if in a few years time I might have to be on MTX and it would be good to have been vaccinated for travel in developing countries before that. Despite all this I am very worried!! I'm sure it'll be amazing and I'm also very excited. Has anyone ever been on an epic adventure with RA in tow?? Any advice?