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.
Wednesday 22 June 2016
Thursday 16 June 2016
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!
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
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