The ugly truth 

Hi everyone,
Sorry this blog is late I will explain why down below. I am trying to keep these blogs as upbeat as possible to show that even with all of these conditions you can still enjoy life and the things you love doing. 

However this blog is going to show some of the worst symptoms that I endure and why it is hard to always make light of it. So as part of these conditions I have problems with my stomach as well, so I can’t eat certain foods without becoming really poorly. I ended up having to go to hospital on Friday night due to something to do with my stomach (I won’t go into the gory details as they are not really necessary) anyway I ended up having to call 111 for advice and then had to go to the hospital to get checked out. 

As per usual they couldn’t find anything wrong upon initial investigation this tends to be what always happens with GP’s and hospitals (all three of my conditions took 11 years to fully diagnose) so I got passed the codeine and told to monitor my symptoms. Low and behold they are still happening and I still feel bloody awful. 

When you are given really heavy painkillers it basically means that you are then out for the count for a few days whilst your body adjusts to them, the worst part is the side effects that come with these medications. For example the codeine that I am taking is really strong and as a result I slept all weekend and was so tired and delirious that I kept crying because I was so frustrated with my own body! 

I am now having the worst pain flare up that I have had in a while so I am spending my days taking tramadol and wearing heat packs at every moment I can, however tramadol gives me the worst shakes and makes me feel like I am not even in the room. This would be enough to stop most people from going to work all week, however I now find that because I am in a job that I love I would rather be at work with all of my supportive colleagues than on my own at home. 

Sitting at home all day in pain on your own actually makes things worse for me, like I will sit at home and most of the time would sit and cry because it is way to much to try and handle on your own. That is why I am so thankful to my mum, sister and Ross they are always there for me whenever I need them even if it is just to have a rant about how awful I feel. It’s not an easy thing for them to deal with either as there is no way that anyone can physically help me as it won’t ever be cured but just knowing that I have their support helps me loads. 

I also want my blogs to become a support network if they can, to make sure that everyone knows that you are not alone in your battles, be in physical or mental health. If anyone ever needs a shoulder to lean on I will always be prepared to be there for them. 

I am going to sign off here and I promise Saturdays blog will be a lot more up beat and happy! I just needed to get that off of my chest, and also wanted to say a big thanks to my mum, my sister Bethany and Ross for being the best support network I have!

Signing off for now,

Scarlett x

Chronic Illness vs Hobbies 

Hi everyone, 
I hope you are all doing well. I also apologise that this one is up a little later than usual but I have spent the past few days recovering from concussion. 

I’m going to start off with some good news that I read this week, Fibromyalgia is now becoming a step closer to being seen as a long term disability…now to someone that does not have Fibromyalgia you would probably think why is ’tis a good thing? Well it means that people that have this are finally beating the doctors views that it is not that bad and that it is easy to live with. 

Anyway this weeks blog is going to be about how hobbies and work actually help me with all of this, I still work full time and am currently in a job that I love, I enjoy going to work everyday, this is so important because it means that I am able to put my medical problems to the back if mind and get on with a days work. If I were to sit at home everyday my depression and anxiety would have come on a lot quicker and would be a lot worse this would also be the case if I didn’t have Ross to look after me as well. 

I ave tried to make sure that I have kept on with my love of reading, from a young age me and my sister have always read books and I still see it as one of the most enjoyable things it do, you can lose yourself to your imagination and this means that I can put the pain to the back of my mind as much as possible. I currently have over 40 unread books sat on a shelf that I am slowly working my way through, I keep telling Ross that I won’t buy anymore books then gain new ones pretty much every month…

It is really important to try and keep in contact with your friends, and trust me being diagnosed with all of these medical problems really shows who your real friends are and who will just drop you because you can’t make plans or never feel up to going out. I am thankful that I do still have some of the most incredible people around me it makes dealing with all of this a whole lot easier…I feel so alone with all of this most of the time as there is not enough awareness out there not many people are willing to learn about it either so it can make you feel really alone. 

My favourite hobby of all however is sleeping…with chronic fatigue it is all about balance and pacing yourself, you need enough rest but also need to remain active, this is hard for a lot of people and these conditions will consume you if you do not have the willpower to fight against them. It is really hard to keep your willpower up I think I have a weekly breakdown where I just can’t face slapping a smile on and getting on with it.

That is my personal motto though….no matter how hard life hits you, slap a smile on and power through, it won’t always be this bad. 

I am going to sign off here, I’m off to see rob Beckett perform tonight and my fingers are hurting from all this time (the joys of being a spoonie) I’m gonna leave a picture of me below just so that you can Actually put a face to the writing!

Signing off for now
Scarlett x 

Chronic illness -my story

Hi everyone,

I wanted my first post to be a little bit about me and start with explaining my conditions and what they mean for me in day to day life. I am currently 20 years old and have been diagnosed with 3 chronic illnesses for 2 years now and registered disabled for 10 months.

I look very much like a “normal” person, this means that you can then become subjected to a lot of judgemental looks and comments and people going out of their way to make you feel uncomfortable (this in turn means anxiety and depression can creep up on you quite quickly)

My 3 conditions are Joint Hypermobility Syndrome, Fibromyalgia and Ehlers Danlos Syndrome type 3. Now you’re probably sat reading this thinking “how on earth do you pronounce these things” and also “what on earth are they”.

So let’s start with the Joint Hypermobility Syndrome this is a “normal” thing that most people will have as it is known as being double jointed this means that the joint in your body over extend and can lock and move in places they shouldn’t. It becomes a Syndrome when you have the chronic pain that comes along with it. This is mainly focused in the joints and makes things a lot more difficult to do in daily life. I was diagnosed with this in April of 2015 and just handed and leaflet and told to get on with it basically, and that it wouldn’t really effect me in my daily life.

Then came the Fibromyalgia and the Elhers Danlos Syndrome a year later, this was only diagnosed due to me fighting for a second opinion as it was believed there was more wrong with me than first expected. So Fibromyalgia is an interesting illness to have as it is mainly chronic fatigue and over sensitivity in the skin, for example if someone were to rub my back for a long period of time to console me it would feel as though my skin is burning.

Elhers Danlos Syndrome is where your all of the above combined really but treated as a separate condition, this now means that when I walk I dislocate my hip partially and it means that my joints are more prone to dislocations than others.

Sorry if this has been really rambly but that’s the short version of all the conditions I have! I promise the next post will be something a bit more exciting about my recent trip to Brighton and how I coped with that and my conditions.

Signing off for now,

Scarlett