Sunday, 4 October 2015

Warning: This post was written between 3 and 4 am.

It’s hard to remain positive all the time. It’s hard to not feel like this is some kind of punishment or karma for something I have done. Despite having remained surprisingly upbeat and unfazed by my diagnosis 4 months ago, it’s becoming hard. When there is no end goal, no cure, nothing that can be done other that trying to slow down the progression of this monster inside me. That is what it feels like, like there is this horrible disgusting evil thing inside me trying to make my life as hellish as possible. Even though I win against it most days, there are times like now where I am too tired to be positive and upbeat and I allow myself to be down and the monster wins.

I am so happy that I pushed the doctors to find out what was wrong with me because I knew something wasn't right, if I had just ignored what was going on I would be blissfully unaware right now. No matter how happy I am that I have been diagnosed I sometimes wish that I had never gone to the doctors and just left it because no matter how hard everything was before and how much pain I was in, at least I wouldn't be suffering from the side effects and lifestyle changes of these stupid drugs, the benefits of which haven’t even kicked in yet. My hands and feet are still swollen and in pain. These drugs as supposed to stop the pain and i am not allowed to take pain killers while on the drugs. Every week I have to take 6 pills in a oner and then folic acid the next day to help reduce the side effects, a few of which are; Bloody vomit, blurred vision, confusion, seizures, hair loss, loss of appetite, tiredness and weakness and joint pain (ironic). I have had my blood taken about 15 times in the last 10 weeks I have had an MRI, x-rays of my hands feet and chest, 3 hospital appointments and have another one in a month where I probably have to have another lot of MRI’s, X-rays and blood tests. I am not allowed to learn how to drive, which is one thing I really wanted to do this year and now I have no idea how many years I will have to wait. I can’t get pregnant while on the drug because it would terminate the baby (this is obviously not a concern of mine now but in the future trying to get pregnant will be a significant issue). If I did want to get pregnant I would have to come off the drug for at least 6 months before even bothering to try and even then I would have to stay off them for the duration of being pregnant and a while after during which time the arthritis would begin to progress again. I can’t meet any guys because when I am out they are all wasted which is awkward for me or they try and be nice and buy me a drink and if I have already had 2 beers that night I have to tell them no which makes me seem like a bitch. I then have to either tell them why I can’t drink which would involve telling a complete stranger a really personal, upsetting and embarrassing fact about myself or I lie and come up with another stupid reason why I can’t drink which would be either; I'm pregnant or I am a recovering alcoholic. This would most likely send them running for the hills.  I already have insomnia and have done for a couple of years but now I really really just want to be able to sleep because these drugs are exhausting me and the only option I have left is sleeping pills and the last thing I want to be doing is taking more pills.
I know all my other posts have been very humorous and light hearted about what is going on, but at the end of the day I have spent the past 4 months terrified and the drugs that are supposed to help my symptoms actually make me feel worse in every possible way. I have asked the doctors multiple times how long I have to do this for and I haven’t had a straight answer out of anyone which I assume means no one wants to tell a 19 year old that this is how her life will be for the foreseeable future. I have googled ‘cure for arthritis’ and ‘new drugs for arthritis’ every other day for 4 months hoping that something will pop up one day and yes there is work being done into a cure and that is amazing but it will be 20 or 30 years down the line before I even get a shot at being given it and it is too damn hard to even imagine having to be positive for that long. In the meantime all I can think about is that I won’t be able to get drunk on my 21st birthday or New Year’s Eve, I can’t do most of the things everyone else can and it is a massive bag of horse shit.
To end this rant I see no other option than to go live on my own in the countryside with my 5 dogs. But in all seriousness, this isn't some suicidal blog post I just thought it was important to show that even though I appear positive all the time, it’s impossible to be constantly optimistic and sometimes I need to have a rant and complain and throw a shit fit about how this isn't fair. I might be sad about it today but I know that tomorrow I will be fine. Because regardless of how much this sucks ass, things could always be worse. I am alive, I am not blind or deaf, I can walk, I have amazing family and friends which some people can’t say and those are the people I truly feel sorry for. No matter how bad it all gets, it would be 19438483 times worse if I didn't have my friends and family.

To once again end on a happy or humorous note, I found out that apparently the Loch Ness Monster did/does have Arthritis too. Odd.

Sunday, 13 September 2015

Still I rise.

A massive aspect of all of this is the fact that I can't drink spirits and I can't have more than a couple of beers on a night out, therefore I can't get drunk with my friends. Fortunately for me, I have discovered in the past few weeks that I don't  have as much of an issue with not drinking on a night out as I thought it would, I have pretty much the same amount of fun without the embarrassing escapades. I am fortunate enough to have some amazing friends who still want to go on nights out with me even though I am sober, there aren't a lot of 19/20 year old's who would want to hang around with someone who can't get trashed. I think that when things like this happen it makes you realise who your real friends are.
There is a poem I came across when I was angry and upset and it summed up exactly how I was feeling. It is great to have as a constant reminder, it is hard for me to explain why I find this poem so helpful but it is called 'Still I Rise' and it's super long so here are my favourite parts.

Does my haughtiness offend you?
Don't you take it awful hard
'Cause I laugh like I've got gold mines
Diggin' in my own backyard

Does my sexiness upset you?
Does it come as a surprise
That I dance like I've got diamonds
At the meeting of my thighs?

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness
But still, like air, I'll rise.

As important as that poem is to me, it's a bit of a dark note to end on, so here is another arthritis                                                                            themed joke to end on.

Sunday, 30 August 2015

There's a reason why 'Sober' and 'So Bored' sound almost exactly the same.

One of the massive downsides of being a young person with arthritis is the fact that you can't drink spirits or get drunk thanks to everyone's best friend methotrexate.

Unfortunately, Leo is correct. Methotrexate is an aggressive drug used to treat some types of arthritis as well being used on those with leukaemia and other forms of cancer. It is knows as a DMARD, a disease-modifying anti- rheumatic drug. It dampens down the underlying disease process rather than just treating symptoms. However, methotrexate also reduces the activity of your immune system (your body’s defence system).The drug interferes with the growth of certain cells of the body, especially cells that reproduce quickly, such as cancer cells, bone marrow cells, and skin cells. It can lower blood cells that help your body fight infections and help your blood to clot. You may get an infection or bleed more easily. The reason you cannot drink spirits on the drug or drink excessively is because when the drug mixes with alcohol it can cause me to become jaundice and go into liver failure, to be honest I will give up the sauce if it means avoiding becoming the new character on The Simpsons.
I started taking methotrexate last week and today is my second dose and it will take months for me to see the benefits. On Wednesday it was my friend's 20th Birthday where she chose to have a 20 bar crawl which was pretty ambitious, even for my herd of alcoholics! My first time out not drinking and I knew it was going to be hard. It was actually fine, I  had as much fun as my other friends, still stayed out till 3 and didn't have a crazy hangover like the birthday girl. The only part I was pissed about was everyone constantly asking why I wasn't drinking and I hadn't really told anyone about being ill other than my family and close friends, and I'm not one to share personal details about myself with anyone let alone complete strangers.So I just kept saying that I was on medication, to which the response was usually 'Aw fuck that! I drink when I'm on antibiotics all the time'. No. That is not the same thing! There was one guy when we were at the club who had been drooling over my friend all night, constantly coming up to her telling her she looked like Kendal Jenner, of course a very flattering comment at first, but this swiftly became tiresome. Later on he came over with a drink that he claimed to have got me. I wouldn't have taken it anyway cause as a rule of thumb I don't accept drink that I haven't seen poured especially from a slimy douche goblin. When I politely said no and explained that I was on medications, he said 'What the fuck is wrong with you just accept the drink, Jesus'. I have only been on this medication for a week and already I am sick of having to explain myself.
Looking onward to bigger and better things, in a couple of days I'm off to Dublin for a well needed break from everything. At the end of the day it is important not to care about what others think.
A lion does not concern itself with the opinions of sheep.

Monday, 24 August 2015

Here Goes...

Writing this is a lot harder than I thought it was going to be but I think that it is something that I need to do. Whenever I heard the word 'Arthritis' I associated it with the golden oldie generation. I thought that it was what happened when some people got old and their bones started to turn to shit.
So, to be told when you are 19 that you have arthritis and realise that you have had it for a few years undiagnosed it comes as a shock.
I have been self conscious about my hands ever since I can remember, my fingers have always been a bit sausage-esque and swollen and I hated my rashes I would get but I was always told was just eczema. I would constantly go to the doctors to ask for help and I was met with various creams ranging from moisturisers to that of steroid. When it came to my swollen fingers I was told to lose weight and drink more water and then it would go away but it was only when I found I had constant chronic pain in my hands and feet that I was taken seriously.
I'm still not sure exactly why I have decided to write this blog and what its purpose will be, that is something which I assume will become clear as I write. I guess  no matter how angry and upset I am about being ill, I am so happy that I pushed to find out what was wrong instead of sitting around and ignoring the problem and potentially leaving my hands to become so mangled that I would struggle to use them. I guess making young people more aware of arthritis and that it can affect anyone is the aim. To be honest I think it will make the whole process easier for me if I have this outlet and can talk to those who are going through the same thing.
The whole process can be terrifying in the space of less than a month I went from being a normal 19 year old to being poked and prodded having shit loads of information unloaded onto me, with a very short amount of time to process it. A month bombarded with MRI scans, feet hands and chest x-rays, blood tests every two weeks and various immunisations to stop me from getting ill.
If anyone is reading this and finds themselves in the same position as me and wants someone to talk to feel free to contact me or look at the list of various websites and groups that I put links up to that I have found useful.
I am still getting used to using this and working out what I am going to do but I will try and post as much as I  can, as often as I can about what is going on and the various trials and tribulations of living inside a body which is attacking itself.