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

Date nights and junk food 

Hi Everyone,
I hope you are all doing well and enjoying the sunshine this week! 

My last blog post got a lot of love and I am so thankful for the support and love that everyone has shown to all of my blog posts. I am currently sat at work typing away on my lunch break, at the moment I spend most of my time writing or reading thanks to starting my blog. 

So this blog is going to be about this weekend and going out to a comedy show on Sunday night. I spend the majority of my time at Ross’s house during the week and also at the weekend, so on Saturday I went to pick up my new glasses and also went to look at some beds…I felt like a proper adult (sad I know). We then spent the rest of the day binge watching the walking dead and riverdale and eating junk food. 

My Saturday was not the most exciting ever as I was still trying to get over my concussion…I am literally the clumsiest person ever and I now genuinely think I need to baby proof any corner that is in the house so that I can’t fall into it!! 

That makes me think actually about all the little things that I miss being able to do like I used be able to, for example a girly thing that I used to enjoy was having a long warm bath with a lush product and being able to take my time with shaving my legs…now shaving my legs has become a task as it really hurts to bend and stand in the shower, I am no longer really able to have baths as they would make my joints seize and I can get stuck in the bath for ages.

I miss being able to get dressed on my own and not have anybody worrying about me that I might fall and hurt myself…I also get tired so easily so tights are now a mission to put on and I love wearing dresses and skirts so I still power on. 

I know to most, the above things are easy and you wouldn’t see them as a big deal, however being 20 and having 20% of the energy a “normal” person would have these things really get to me. I would say that, because I am quite a stubborn person I will continue on and not pace myself as I should, this is purely because I get so angry at myself because I want to be able to do the basic things in life again unaided and without having to worry. 

Anyway back to my weekend, on Sunday night we went to see Rob Beckett perform in Peterborough, my mum got us tickets to go for Christmas, I had already seen once before but wanted to go again seeing as I enjoyed it so much the first time. Me and Ross love nothing better than going out for really tasty food, we have a particular favourite restaurant called wildwood and they do the most incredible garlic bread with mozzarella and caramelised onions on top it is too die for and considering I have stomach problems and shouldn’t eat a lot of bread it comes at some price! 

So we went to wildwood for dinner and then went to a desert shop called Kaspa’s they do crepes and waffles the size of my head and it is the best. I have a very strong love for peanut butter as well so to find out they do a waffle drenched in melty peanut butter and fresh banana was music to my tiny lil ears. (I will insert a picture here use be warned it’ll make you hungry and jealous) 

So once we had finished eating and finding out that as per usual we had eyes bigger than our bellies we walked back to the theatre that Rob was performing in (which was quite nice as it meant I could walk off my food baby). 

Rob Beckett is utterly hilarious when he performs and he engages with the audience so much that 75% of his show is talking to people. Of course me being a magnet for awkward moments meant that I was the first victim he chose….he also called me an arsehole cause I’m a bit blunt but I found it hilarious. I also learnt that the hole in the ozone layer is getting smaller so even though it was a comedy show I learnt something new! 

After the show I then got the chance to meet Rob and have a picture taken with him so that was pretty cool! (I’ll put the picture below because I quite like it) 

I hope you guys had a good weekend as well I’d love to know what you all get up to especially those outside of the UK. Feel free to leave a comment and let me know how your weekends were I’m going to sign off now and binge watch the walking dead with Ross (my idea of my perfect night in)

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 

Invisible illnesses vs online dating 

Hi everyone! 
Hope you are all doing well, this blog is again a little different, I have been encouraged by two lovely ladies (Sarah and Leanne) to write about my experience of online dating before I finally found my lovely boyfriend Ross. 

So a little bit of history, I was with my ex for 2 and a bit years and when I got diagnosed for the first time he just said “oh well you’ll get over it won’t you” as you can tell that did not last much longer than that…So I then sat in the bath the same night we broke up and made my tinder profile. 

Tinder in my opinion is the worst dating app ever, it’s cheesy chat up lines and one night stands (both of which I was not interested in). Now having 3 chronic illnesses that are to do with mobility you sometimes have to use crutches or walking aids, so I decided to write in my profile that I am disabled (to avoid any unwanted surprises).

Now this brought on a whole host of stupid things to say to someone who is disabled…the first one I had was through tinder and was in this exact wording ” How the f**k do you have sex if you’re disabled” I don’t even know where to begin with speaking about this, it was the first time someone had ever said anything like this to me so it’s safe to say I went full on psycho crazy on him….probably not the best way to deal with it in hindsight.

I decided after this that I would try giving plenty of fish a try….turns out thats where I ended up finding Ross but I’ll get onto that later. So I again came across lots of ignorant comments…so the first one I experienced was a guy that had literally just messaged me to say “You’re not disabled…you’re stood up in one of your pictures” cue Scarlett writing out a really long paragraph on invisible illnesses and how you shouldn’t judge someone before you meet/get to know them. 

I ended up getting so many questions about my illnesses due to writing about them in my bio, I also put in there that if they couldn’t deal with being with someone disabled, to not bother wasting time by messaging me at the end of the day I was there to find someone to help me and to support me as much as I needed and just someone to go home to at the end of a long day. 

So anyway back to the stories of dating, the other really stupid thing someone once said to me was “I know what it’s like being disabled I’m ginger and that’s the same thing” I can’t even talk about this cause it makes me so freaking angry. 

So from being on Tinder and POF I went on few dates, one date was after I called him crying my eyes out after a drunken argument at 2am safe to say that went nowhere he probs thought I was a psycho. 
When I stuck to my type I soon learnt that most of them turned out to be complete arseholes (I am not stereotyping all men by the way). Then when I had literally given up hope Ross messaged me, he has long hair and likes roc music, I swore blind I would never date anyone with longer hair than me. 

Turns out he is the most wonderful boyfriend I could have asked for, he helps me in every way that he can he helps me get dressed when i get stuck, I’m not allowed to carry heavy things up the stairs etc.

If I learnt anything from my online dating experience it would definitely be step out of your usual type, the boy you dream up in your head probably doesn’t exist. Always give someone a chance remember learn to get to know someone before you judge them, this is the whole reason I started these blogs is to raise awareness for invisible disabilities it is so important to think before you speak. 

So I’m going to sign off here, I have plenty of dating stories that I can delve into that may amuse you, so if that would interest you then feel free to let me know. I hope you enjoy this one let me know what you think and please share my blogs with your friends 🙂 

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