16 things I've learnt in 2016

1) I literally have the best and most supportive family and friends I could ever wish for.

2) Don't let anyone tell you what to do, try and change you or make you feel uncomfortable about yourself.

3) You have to believe in yourself before anyone else believes in you

4) Confidence takes a long time to come back after being knocked

5) Failure sucks

6) Never underestimate the ability of food to cheer you up

7) Having brunch out is one of my favourite things to do

8) Charity shops are amazing for buying clothes

9) If people don't make you feel good about yourself remove them from your life

10) I'm most content when abroad in a hot country drinking a mojito with good company

11) I make a pretty decent caramel latte.. who needs starbucks?

12) I nap a hell of a lot

13) My time management is awful

14) Always say how you feel 

15) To-do lists have the ability to make me think I have my life in order

16) I thrive from positive people/experiences and don't have time for those who bring others down constantly

Peace out 2016 and happy new year everyone xoxo

Q&A post

Thank you to everyone who kindly asked me questions regarding my RA to help me in my mission to educate and inform people what it is like to live with this condition. I am very grateful!
I hope my responses answer your questions well and you feel you gain a better understanding after reading this post.

1) How does RA affect your eating habits?
I don't really think it has changed much in terms of what I eat. However, I do notice a difference when I have a week of eating particularly unhealthy, I feel the start of a flare-up or feel absolutely exhausted. So I guess I try to just eat a balanced diet but don't feel I have made any drastic changes since being diagnosed. I still treat myself to a KFC probably a bit too often! Also, before being diagnosed and when my symptoms weren't under control I struggled a fair bit with cutting up food due to pain but it didn't really stop me eating it.

2) What medication are you on and how often do you take it?
I am on Naproxen which is a Non-Steroidal Anti-Inflammatory Drug (NSAID). I take it as and when I need it but while on placement I feel I benefit more from taking it 3 times a day.
I am also on Hydroxychloroquine which is known as a Disease Modifying Anti-Rheumatic Drug (DMARD) which helps tackle the underlying cause rather than symptoms. This medication has worked wonders for me and I take it once a day.

3) What was your initial reaction to getting diagnosed?
Initially I was actually quite relieved. I finally knew what was causing the painful and swollen joints I was experiencing. I was also a bit confused as to why I was being diagnosed with a condition I had previously associated with 'old people' at the age of 18. Then after reading up more about the condition I did start to feel anxious about impacts it may have on my future. I found myself on google and the NRAS website a lot, trying to make sense of it all.

4) Had you heard of RA before getting diagnosed?
I had heard of it before getting diagnosed but this was only because I was having symptoms for about a year before getting diagnosed and naturally took to googling what it could be while the doctors weren't doing a whole lot to help me get tested. I had heard of arthritis but was not aware of the specific types and how they differ.

5) What part of your lifestyle has it affected most and why?
More recently I would say it has affected me on placement the most, so in the career aspect of my life. This is because on my first placement I began to realise the impact this condition may have on my future and it was the first time I felt my RA was limiting me in my ability to do what I could do previously. I think it was on placement where I first cried about being diagnosed due to the reality of it hitting me. Also it was brought up in conversation most days while I was there. This was something I was unfamiliar with as most days prior to this experience I could just crack on without it crossing mine or other people's minds. It is more of a 'fear of the unknown' type of feeling as it is such an unpredictable condition with both physical and psychological impacts.

6) What is the biggest change you've made to day to day tasks?
I can't really say I've made any changes to my day to day routine or tasks. Only when I have flare-ups I will probably change the way I do things and try to do less throughout the day so as not to aggravate pain further. This also depends on where the flare up is. If in my hands or wrist I would probably just use the other hand more or hopefully have someone around to help! If I have a flare up in my shoulder, again I would use the other arm more for doing things like lifting and try to sleep on the other side, although shoulder pain does make sleep very difficult.

7) What are other treatments apart from medication?
As a physiotherapist in training I guess I should probably say physio and exercise. I haven't had any physio for it myself but since I started using the gym more regularly and becoming generally more active I have noticed a reduction in symptoms and just feeling more energized. But to those with RA and not much knowledge of what exercise you can do and how much, I would definitely recommend talking to a physiotherapist for guidance.

8) Would you ever consider surgery?
At the moment I probably wouldn't. Firstly because I don't feel like I need it at this stage and also because I would rather try other management strategies before resorting to surgery, But if i needed it later on in life I would be up for it if it were to improve my quality of life for the better!

9) What does RA affect most in your day to day life?
At the moment I would say fatigue is the biggest problem for me. By the end of the day on placement, getting back to my bed to nap was almost unavoidable. Like I know being tired after being busy is normal but this kind of tiredness feels different to anything I experienced before having Rheumatoid Arthritis. As I progress through placements, I am attempting to come up with better ways of managing it.

10) Does RA/the associated medication effect your mood? And if yes in what way?
As far as I am aware, the medication I'm on hasn't affected my mood and I don't think mood changes were listed as side effects. However, the RA itself can effect my mood occasionally. It's not like I am down about it everyday or anything but if I am having a flare-up it can effect my motivation to do things which leads to overthinking and worrying. But I try not to let it get to me and my friends and family do a pretty good job at allowing me to forget about it.

11) Have you ever let your RA stop you from doing anything?
Ermmm.. I don't think I've ever thought to myself  'I can't do that.. I have RA' but I guess of I'm in pain that day I will make careful decisions not to do anything that will cause further pain. But on the whole it hasn't stopped me going to uni, going on nights out, socialising, having a part-time job, going on holidays or exercising (most of the time). I have a more 'don't knock it until you try it' kind of approach.

12) What age were you diagnosed?
I was diagnosed at age 18, in late 2013.. I am now 21. Started getting symptoms when I was 16 or 17.

13) What does a flare up feel like?
The affected joint normally feels hot to touch. I normally have visible inflammation with a noticeable difference between right and left if only one side is affected at a time. Also PAIN.. the main thing which is felt! Describing pain is always difficult but the words throbbing and burning describe the initial feeling which after a day or two becomes more achey and heavy. I also feel a lot more tired than usual and often can't sleep, ironic ay?! When I first had symptoms before seeing the rheumatologist and getting treatment, I did occasionally use to feel sick as well because the pain was so bad.

14) Does arthritis run in your family?
No, well not that I know of. Strange though as RA is normally genetic so getting diagnosed was pretty random for me.

15) Does having RA effect activities you used to do?
I don't think it has directly stopped me doing something. I did give up running but it wasn't because of being diagnosed and I have gone on runs since and have been fine with it. I have even taken up new activities such as going to the gym so it's fair to say the diagnosis hasn't had a drastic day-to-day effect.

16) Does your diagnosis make you feel angry or optimistic?
Hmm. I can't really say I've ever felt optimistic about it but it definitely hasn't been all negative. When I was first diagnosed I can't really say I was angry; I was relieved to have a diagnosis of something so I could start getting the right treatment and know how to manage it. When it impacted on my performance on placement I can't really say I was angry still because there is no one or nothing to really direct my anger or bitterness towards. It was no ones fault, it is just one of those unfortunate things but in my opinion not worth anger. I did however feel upset and anxious that this diagnosis will be with me my whole life and throughout my career. On my next two placements though I experienced minimal problems and was better equipped mentally to deal with the flare ups. This did give me hope that it won't always be bad and I can still do what I need to do to become a physiotherapist and I just have to adapt certain techniques and learn to manage stress and fatigue.


17) Do you ever think about the effect RA may have on your future?
Yes, it has crossed my mind a fair bit. The typical pictures you see associated with RA are of hand deformities caused by the RA and it does make me think "is that my future?" but at the same time I can look at it the other way and think there may be many new developments in research about treatment and management of arthritis. Also by keeping active now and attempting to do all the right things will hopefully minimise the damage in the future. At present it has only ever really effected the career part of my life and not any other aspect so it is hard for me to think about the effect it may have on other areas in the future.


18) How do you cope with the bad days/flare ups?
I like to think I deal with them pretty well now. I normally just dose up on anti-inflammatories and try to distract myself and hope the pain doesn't stop me from doing too much. But then again it can depend what I'm doing on the day. If I'm busy/need to get a lot done such as on placement, I realised the importance of telling my colleagues so they know I'm not just taking it easy for no good reason. Before seeing the rheumatologist I was not good at dealing with them both physically and mentally. Physically medication wouldn't touch the pain at all, I couldn't sleep because of the pain and on top of all that I didn't know what was causing the pain so altogether a stressful time.

Failure or success

My RA with it's unpredictability and bad timing caused me many problems on my first clinical placement (part of my physiotherapy degree). This led me to be unsuccessful on the placement making it a negative experience I hate to think about but am always haunted by.
I was told by numerous people that failure makes you a stronger person and you will look back on the experience and be glad it happened. However for me, I look back and am filled with anxiety. A stepping stone towards my future career had gone so tragically wrong due to something mainly out of my control. It may be that it's too soon after the bad experience but I really don't feel it has made me a stronger person and that I can look back on it and see it as a positive.
It completely knocked my confidence going forward onto my next placement and even made me doubt my career choice. However I snapped out of that pretty quickly when I was working alongside the most amazing team and started receiving positive feedback! The placement went really well and has given me the confidence boost I need to move forwards.
This reinforced in my mind that I thrive from success and use that as a motivator. There may be some people that benefit from failing at something but I definitely know I'm not one of those people.
Here's to a fresh start!!

What is Rheumatoid Arthritis to me?

Well to me Rheumatoid Arthritis (RA) is just a massive pain in the arse. However, it is one you have to learn to deal with rather than just hoping it will go away. For me (and probably many other sufferers) it is annoying to live with largely due to its unpredictability and it having more of an effect than just physical pain. 

I can go weeks where I can almost forget I have this condition. I can go out to the pub/clubbing, carry my food shopping, cook, go to the gym, survive the day without a nap and so much more no bother at all. But when going through a flare up or a period of having multiple flare ups, my body just changes in a way that is hard to describe. I can deal with the physical pain very well I feel. I know to manage the swelling with ice, rest the joint and slowly get back to moving it normally and I can get through the day without even complaining too much. However, at the end of the day I just feel fatigued, exhausted and pretty much physically and mentally drained as if I've ran a marathon. Whether I've spent the day at home, not really doing much or have been very busy, the fatigue feels the same, yet sleep is out of the question. I went through a lot of this at the beginning of my diagnosis (late 2013/early-mid 2014) before starting hydroxychloroquine, and from about May when I was on placement until recently. I never really feel as if I can't do anything that I want to do, more that it requires a larger amount of effort and that I'm less likely to carry things out wholeheartedly. Consistency in motivation and managing fatigue are definitely things I need to work on.

Another aspect of the condition I have been made very aware of since January 2014, is the affect on the respiratory system. I experienced inflammation of the airways and had a suspected pneumonia which has now weakened my lungs. I dread winter coming round as a normal cold will often lead to me having a chest infection and nasty cough for around two weeks, However, my trusty inhaler does a good job and keeping physically fit throughout the year I find helps me feel better. 

So on the whole I feel my experience of it has been more of a learning curve of how to cope with it rather than just a negative spiral of pain and worry. There are times of uncertainty but my recent experience of placement has taught me to just take each experience as it comes, adapt and make changes when necessary and just to focus on my fitness and strength, which I found before kept my flare ups to a minimum. 

First thoughts....

When I first got diagnosed, I have to admit I didn't really know how to feel.. my feelings were pretty mixed but I guess at the time I just accepted the diagnosis and moved onto the next stage of the process: getting the correct treatment.
I did initially feel relieved as I finally had a diagnosis and in my opinion it could have been a lot worse. My random joint pain now had a name which would make it easier for me and others to understand. I could now go onto getting specific treatment in a hope that things would settle down.
I also felt slightly confused as arthritis is a typical term associated with older people. Words such as 'autoimmune' and 'rheumatologist' were being thrown around, which prior to an intense lot of googling, I was unfamiliar with. The internet, particularly the National Rheumatoid Arthritis Society (NRAS) was where I educated myself on the condition, which did scare me but also reassured me that although there is no cure for this condition there are ways to manage it. Not only was I confused, but I am sure family members and friends were too, who like me would mostly associate arthritis with older people. I think people's confusion and questioning was what led me to only really tell people when I felt absolutely necessary. It isn't like I am ashamed of it but most of the time I just don't feel the need to bring it up. It is also hard to explain something you don't fully understand yourself. Also now thinking back, I probably didn't tell people as I didn't want to be viewed as different but more importantly I didn't want to label myself different in a way that may make me unable to carry out things I want to do. I guess you could say that at aged 17-21 you have the world at your feet, end of one chapter and the start of another, so anything that could potentially stop that was subconsciously blocked out.
Now writing this 3 years on from a diagnosis, I see and have had experiences that have made me realise the importance of thinking of the future, particularly in terms of my career... and these thoughts don't have to be negative or even decisive but just thinking of management strategies to put in place rather than avoiding the subject is a much better approach.
So, when first diagnosed I didn't feel sad or angry or even particularly worried about the future, Being a person with a positive outlook made me just take it in my stride and think about getting the right treatment, which I'm not entirely sure is a good thing but I now see the whole process, the good and the bad as a learning curve. I think it is perfectly normal not to know how to feel about something like this and there will be a stage where you start to be more proactive, even if it is just in thoughts.

My diagnosis/story

Not the most exciting post but thought I'd just share my story of my diagnosis as I've read many online, each being very different.

I got diagnosed with RA about 3 years ago, after suffering symptoms a year and a half before. It was a long-winded process that definitely wasn't straightforward.

The pain and swelling started in my hands and wrists with no known injury or cause while in my last year of school (age 17).. at first I thought nothing of it until these pains became regular, now in both hands, wrists and shoulders making daily activities and sleep increasingly difficult. I initially went to my GP who prescribed ibuprofen and sent me home. A few weeks later I woke up with my left hand almost double the size of my right hand at the knuckles, very red and very painful so went to A&E who again prescribed ibuprofen and gave me a sling.

I continued to have what I now know to be flare ups in my joints but felt reluctant to go back to the GP as I felt it was a waste of time to just be prescribed ibuprofen (which doesn't touch the pain at all) again and again. It wasn't until I started working at Sainsbury's where I went back to the GP due to having to take time off work and was having constant sleepless nights due to pain! Another 2 appointments later I managed to get blood tests and finally felt like I was getting somewhere towards finding out the cause of the problems!

After a mix up with the blood test results, I was eventually told I had RA and got referred to the rheumatology team at St George's Hospital where I have been treated since.

I was started on anti-inflammatories (diclofenac) which eased the pain but by no means got rid of it so at my next appointment I was offered Hydroxychloroquine, a Disease Modifying Anti-Rheumatic Drug which suppresses the immune system and helps tackle the underlying disease process rather than the symptoms. However, it was a tough decision, weighing out the pros and cons of taking a medication like this, although not very harmful, being young it isn't always a good idea to be on too much medication.

I decided to take it which was one of the better decisions I have made in my life as my symptoms and flare ups were under control, just in time for me to start my course at uni!!

First post!

Hey, I am Maria, aged 21, living in London and am currently a student studying Physiotherapy. There isn't really much to say about me apart from I love my family and friends more than anything, I love to travel and I love to eat!
This isn't something I would normally do- talk so publicly about my feelings,  but I guess it's a good way to get things off my chest but also share my experiences and relate to other people in the same situation.
I've decided to blog about my diagnosis, thoughts and experiences of having Rheumatoid Arthritis, an autoimmune disease affecting my joints which I've now had for nearly 4 years. My main reason for doing so is to raise awareness about young people also being affected by this condition and to talk to people other than health professionals about the effects it can have on daily life.
This isn't going to be a depressing blog with me feeling sorry for myself in the slightest, most days I can forget I have this condition and live a 'normal' life. I am writing it to share the highs as well as the lows and just my general experiences. I feel ready to share this now after discovering that it is no good keeping things bottled up and even if people around don't understand what you're going through they can still help!
Enjoy!!xxxx